May 26, 2012

Back Home With Miss A

Thanks again for all your thoughts and prayers. Overall, the last two days went better than I could have hoped for, except for the outcome of the procedure, which looks like it helped but not as much as expected.

It was good that I didn't chicken out and postpone it, because the situation was just a little bit more advanced than we thought based on the ultrasounds.

I held myself together better than I thought I would on Thursday. The only point at which I fell apart was after I had to hand her over to the cardiac cath nurse. She literally said "I promise" to me three times - "I promise she'll do great," "I promise we'll bring her back to you better than new in a couple of hours", etc. I'm sure the hospital's attorneys would have been hyperventilating if they knew she was using that word, but it helped.

The procedure went a little bit faster than expected. I was in a consult room, not quite done pumping, when R called my cell to tell me it was done and everything went well.

The cardiologist was expecting the pressure on the right side of her heart to be somewhat lower than on the left. Normally, the pressure on the right side is significantly lower than on the left. If it becomes higher than the left, then damage to the heart muscle begins to occur.

When they got in there, they found that the pressure was exactly equal on both sides. So if we had postponed even for just a month, it's very possible the pressure would have been higher on the right than the left at that point.

They also found that the heart muscle had started to thicken ever so slightly just below the pulmonary valve, which technically is damage and is another indicator that now was the best time to do this procedure. The cardiologist said because the thickening is so minor and she's so young, it's likely that it will resolve itself as she grows.

The peak pressure on her right side was at 45 when they started the procedure. After they inserted the balloon to separate the partially fused valve flaps, the pressure dropped to 15. Anything between 1-25 is considered mild, 26 to 75 (I think) is moderate, and anything above that is severe. The cardiologist said he's hopeful the pressure will drop even lower in the next few weeks.

However, she had another ultrasound yesterday morning, and it showed a peak pressure of 27. So it was still a significant improvement, and the nurse practitioner who came in to speak with us about it said that she wouldn't have even needed the procedure if her original peak pressure was 27.

But it's still technically in the moderate range, and since it didn't improve as much as expected, she said it's possible Miss A might need the procedure again at some point, but likely not for several years if at all. We knew that pressures are lower when the patient is under anesthesia, but we didn't expect the number to come back that high.

We have a follow-up appointment in a couple of weeks, so we'll see what the numbers look like then and what the cardiologist thinks.

Miss A was quite the trooper. For the most part, she was her usual happy, smiley self. The only things she didn't like were getting the IV put in (I'm assuming, since they did that in the cath lab and I wasn't there for it, but they told us that had to be done before putting her under anesthesia), getting the IV taken out (because of the tape that had to be pulled off of her delicate skin), and the blood pressure cuff.

They had the cuff on her arm until around 2 a.m., when they were able to take the pressure dressing off her leg where they had inserted the catheter. None of us got much sleep until then, because it would inflate, which startled her, which caused her to start flailing her arms, which caused her swaddle to become undone, which made her cold, which caused her to start kicking her legs, which disrupted the ability of the oxygen monitor on her toe to monitor her oxygen levels, which caused the machine's alarm to start going off, which caused her to cry even harder than she was already crying because of the cuff and being cold.

So R and I were jumping up literally every 20 minutes to try to soothe her and keep her covered as best we could. We use the velcro swaddle wraps at home (I'm not a very good blanket swaddler), and we had brought one with us, but because of all the wires hooked up to her for monitoring, we couldn't use it.

Once the nurse was able to move the cuff to her leg around 2 a.m., she didn't seem to mind it so much, and we got a 3-hour and then a 4-hour stretch of sleep.

Now we're taking it easy hanging out at home for the weekend. She usually wants to eat about every 3 hours, but now she seems to want to eat on a 2- or 2 1/2-hour schedule. I think her little body is trying to make up for the calories it missed on Wednesday and Thursday. So I'm back to not getting anything done between feedings other than a quick bathroom break or grabbing a snack, but I'm sure she'll return to a more normal routine in a few days. I'm just so thankful and relieved that she's doing well - that matters much, much more than me getting stuff done...

May 24, 2012


It went well. She's in her room now. I'll post more details when I get my laptop set up. If I'm not able to do that tonight, I'll post tomorrow. Thanks so much for all the thoughts and prayers - they really helped us get through today.


Miss A's procedure start time has been pushed out 90 min due to the procedure before hers taking longer than expected. More updates to come later...

Miss A's Heart Procedure (And My Freakout)

Yesterday's echocardiogram didn't show any significant improvement. The balloon valvuloplasty is scheduled for 1:30 p.m. PT/4:30 p.m. ET tomorrow (Thursday).

I'm trying not to freak out. Rather unsuccessfully.

Last night, after Miss A's last feed and the lights in the guest room turned off (R sleeps in there during worknights), I snuck downstairs and grabbed a spoon and carton of ice cream. Proceeded to eat 1/4 of said carton, directly out of the carton.

This morning, I called the doctor who will be performing the procedure to talk about whether it could be postponed for a while. He thinks it could be postponed for up to a month or so, but not the 6 months to a year that I was hoping. Since I'm due to go back to work in 3 weeks, doing this in a month would mean I'd have to go back to work right after rather than have a few more weeks to spend with her afterward. So despite being really, really nervous about this, I opted to stick with the original plan of doing it tomorrow.

After that decision, I baked a pan of brownies and added an entire can of cherry pie filling into the middle of them for good measure.

That was about 8 hours ago. The pan is now half empty.

I really want to teach Miss A a better method of coping with stress, one that doesn't involve food. I decided that today is not the day to begin modeling such a method. I need to start with something that involves only a small amount of stress, like a hangnail. Not something like a 9-week-old baby undergoing general anesthesia so that something can be threaded up into her heart.

R, who usually scolds me about my sweet tooth, apparently is feeling the stress too - he also started dinner with a generous piece of chocolate cherry brownie without me even offering it to him.

I don't know if it's that Miss A is picking up on my stress or just really bad coincidental timing, but this is the first really bad night she's had. At our late afternoon feeding, she started pulling away from my breast and ate a little less than usual. (I weigh her on an infant scale at the beginning and end of feedings so that I know how much she's getting.) Then she started screaming bloody murder before our early evening feeding, and only took an ounce. She would suck at my breast 1-3 times, swallow, then pull away and scream.

She screamed for about 2 hours.

We also tried a bottle with some Pedialyte. She took maybe 1/4 of an ounce, probably out of surprise about the different taste, before the screaming recommenced.

The pediatrician said he thinks it's probably her picking up on my stress and not to force her to try to feed. He said she will be given fluids during the procedure tomorrow and that we can catch up on the nutrition later if need be.

We managed to get her to sleep, and she's been sleeping soundly for about 3 hours now, probably because she's so worn out from all the crying. She's had about 1.25 ounces (breast milk plus Pedialyte) in the last 8 hours.

And to top it off, our precious, sweet, 14-year-old dog started to have something bother one of her ears tonight. She's shaking her head literally every 3 seconds, stopping occasionally only long enough to try to scratch at it with her foot and whine before resuming shaking it. I couldn't see or feel anything in it. I tried gently cleaning it with q-tips, then applying hydrogen peroxide to the areas that were bleeding from the scratching.

It didn't help. The shaking (which causes jangling of her collar and tags) continued. I wet down some cotton balls and tried rubbing those in her ear. It didn't help.

The constant, repetitive jangling of her collar was more than my completely frayed nerves could handle. R offered to have her go into the guest room with him, and I took him up on it. I'm not sure he's going to get any sleep tonight, which is the whole point of him being in that room. And it is the first time I've banished the poor dog from my presence. She hates to ever have me be out of her sight. I feel horrible, but I just couldn't deal with that on top of Miss A's shrieking screams and my nerves about tomorrow.

This is not how I wanted the night before her procedure to go.

The doctor said it's a routine procedure, that "it will be a piece of cake" and "she'll do great". (His exact words.) That complications are rare, and serious complications are extremely rare. But if you've read this blog for any length of time, you know that "rare" doesn't comfort me, because we've wound up on the "rare" side of the odds (in both good and bad ways) many times.

Please, dear God, let tomorrow go well. Let her be okay.

May 15, 2012

Medical Drama, Now In Pint-Size Form

Now that Miss A is here, I was hoping we would become normal people who only go to the doctor for well exams and the occasional cold or allergy flare up.

Um, yeah, that's not going to happen.

I need to accept the fact that we're just not normal people when it comes to medical stuff. Because Miss A is less than 2 months old, and she already has not 1, but 2 cardiologists.

We knew that any child we have would need a cardiologist since there's a 50/50 chance of inheriting the Brugada Syndrome that R and his dad have. So far, her EKGs have been normal. However, that doesn't mean she's in the clear - a normal EKG doesn't necessarily mean she doesn't have it, it may just mean that it's not showing up yet. We're in the process of doing some genetic testing, but it will be 3 or 4 months before we have any information on that front. It's also possible the testing may not give us any information about her status, in which case she will need EKGs on a regular basis (I think every 6 months to begin with) throughout her life.

All of that is being handled by a cardiologist who specializes in issues with the electrical system of the heart.

When she was born, a heart murmur was also detected. At first she had two issues: a PDA and pulmonary valve stenosis. The PDA is basically a blood vessel in the heart that is supposed to close at birth or within a couple days after. Hers didn't close that quickly, but fortunately when she had a follow-up ultrasound of her heart on May 2, that showed that it had closed.

Unfortunately, it also showed that the pulmonary valve stenosis is still an issue. There are 3 flaps that are part of the valve, and her flaps are partially fused together, which means that they don't open as wide as they should, so the heart has to work harder to get the blood through there and to the lungs.

Right now it's not causing any symptoms, but if it progresses, eventually the heart wall will get thicker because of the extra exertion.

So a second cardiologist, one who specializes in structural issues of the heart, is managing that issue. Think of the first cardiologist as an electrician and this one as a plumber.

We have another ultrasound on May 22, and if that shows that the stenosis is getting worse, Miss A will have to have to undergo a cardiac cath lab procedure in which the doctor inserts a catheter in her groin, threads it up to her heart, and then uses a balloon to "tear" the flaps where they're joined together. It would take 2 to 3 hours, and it would require an overnight hospital stay.

There is a possibility that her stenosis won't progress and she won't have to have the procedure.

On the bright side, if you're going to have a stenosis issue, apparently this is the one to have, according to the cardiologist. Some cases of stenosis involve the diameter of the heart valve itself being too small, in which case they have to go in and make it bigger, which can involve actual surgery rather than just a procedure. So we're very thankful that is not the situation we are facing.

Still, they're talking about anesthesia. And an overnight hospital stay. For our barely-2-month-old. Who it took about 10 years for us to even have.

If she has to have the procedure, all I can say is that while someone is giving her the anesthesia, someone had also better be giving me valium. A lot of valium. Because me in a waiting room for 3 hours under those circumstances won't be pretty...

May 13, 2012

Mixed Mother's Day Emotions

I stopped in at a bakery a couple of days ago to grab breakfast, and the lady who was ringing up my order was pushing the sale of Mother's Day gift cards. She asked if I was a mom.

That's the first time anyone has asked me that recently. It was strange to be able to say yes. I left there grinning from ear to ear.

But at the same time, my heart aches because I know there are so many women out there for whom this is such a painful day, including many of you who are reading this post.

I still relate to the pain. I think I always will. There were years where we went away for the weekend and literally ignored the day and (having apologized in advance) didn't even call our mothers. It was just simply too painful.

One thing I don't think I've ever admitted on this blog before is that there were times - particularly after miscarriage #6, but even during the first trimester of the pregnancy with Miss A - where I began to wonder if everything we were going through was worth it. I even wanted to pose that question to a few of you who had finally achieved the dream, but I didn't. Partially because I was afraid that if I actually typed the question out, I'd begin to feel that for me the answer was "maybe not", and partially because I was afraid that if I voiced the question, maybe it would mean that I didn't deserve parenthood, that even simply asking meant it was something I wasn't cut out for.

But now, here, finally celebrating this first Mother's Day with a baby actually in my arms, I have the answer to that question. I know today is the official holiday, but honestly, every day of the past 2 months has felt like Mother's Day to me.

I am so thankful for that, and I hope with everything I have that those of you who are still fighting the battle find yourself holding your dream in your arms as soon as possible.