Health Update

Tomorrow, we go to a big city about four hours away, to do this further blood/urine testing, to find out what's up with the metabolic stuff, because they want to do the tests there at their own lab.

I got the impression we'll get an answer tomorrow, but can't swear to that.

The woman I talked to at the children's hospital said that "It's most likely just preemie numbers" and that "If the doctor were really worried, he would've told you to come to the ER today" which made me feel a lot better.

Anonydaddy (who is a cardiologist) is not at all concerned about the heart issue, and he researched the metabolic issue last night and Anonymama told me he said that "By far, the most common cause" is what they call transient neonatal whatever - in other words, the levels are temporarily high, just because they're a preemie / newborn.

We're keeping our fingers crossed that that's what's going on here.

So, how are we going to manage this trip, with an eleven-day old baby?

For starters, we're not driving all that way. That was my biggest concern, given our level of sleep deprivation.

We're going to drive to CapitalCity and catch the train to BigCity, arriving around 11:45, for our 1 pm appointment.

The hospital is only about eight blocks from the train station, and we're taking the stroller, so if the weather is nice, we'll just stroll down there. If it's too yucky for Peeper to be out in it, we'll get a cab.

And what about the pumping?

Not pumping for the day is really not an option. It's not just about Peeper eating tomorrow (she could manage with formula just fine, although I would hate it), it's about her eating for the next several days, because no stimulation all day would play hell with my already-just-barely-staying-ahead-of-her milk supply.

Not to mention the misery that I would be in, from the engorgement.

The rental pump that I have is sort of portable, in the sense that one could pick it up and carry it around, but it's not one that comes in a pretty bag, ready to sling over your shoulder and carry off to your power-career.

As luck would have it, a friend who is on our Peeper Update email list has an extra Medela Pump in Style that she's not using, and she offered it to me. Permanently.

She upgraded to the "Advanced" model when this one lost some of its sucking power over time, but since I'm such a newbie, I can't turn it up all the way anyway, so it's fine for me.

Shrike found a car adapter that works for it, so the plan is to pump on the way there (or in the parking garage) before we get on the train, when we get to the hospital and again before we leave (We figure there will be no problem with asking for a place there; it's a children's hospital, they may have a designated room, at least for the NICU moms.), and then when we get back to the car.

But wait, there's more!

This is our friend K, who is a gestational carrier (surrogate). She gave birth about four weeks before I did, and is pumping milk for the baby, but is making more than she really needs - so she offered us some for Peeper.

We had to think a minute on that, to be sure we were comfortable with it, but given that, in order to be approved as a surrogate, K had to be tested just as thoroughly as Popeye (and Shrike, for that matter) had to be tested to be approved as a donor, we decided it was a great idea.

Shrike wasn't sure how I'd feel about it, and asked me if I'd be okay with her having another woman's milk.

Of course, I'd much rather she have my milk (and that's still the goal, even for tomorrow, as screwy as it will be) but if that's not available, I'd rather she have another woman's milk than formula.

So, I've thawed, bottled and refrozen a good bit of K's milk to take with us tomorrow. I might have one bottle "banked" by morning, but little Peep is sucking down the final drops of my last pumping session even as I type, so I'm not holding my breath for that.

Of course, I'll be pumping through the day, but given the less than ideal circumstances, and the stress that I'll be under, and the fact that she's been increasing her intake lately, I don't want to count on making enough.

This way there's no pressure, and I can just think of the pumping as maintaining supply and avoiding engorgement. Any milk that Peeper is able to get out of the deal will be a bit of a bonus.

I'm also taking some formula, just out of an abundance of caution.

Good Lordy, I really am somebody's mom now!

Peeper Photos: Days 1 - 3, OB Ward

Peeper's Health Concerns

First, you might notice that this post is not tagged "Adventures in Baby-Making."

Shrike pointed out to me today that we are no longer baby-making, we are baby-having.

Touche'

So, on to the topic at hand - the various health issues and concerns that Peeper has had in the nine days that she's been in the outside world.

Issue 1 - Feeding / Growth
As I originally announced, when Peeper was born, they told us that she weighed 5 lbs 4 oz. We were all surprised that she was that big. Given the size estimates from the ultrasounds, we were expecting her to be under five pounds.

Monday evening, probably within the first hour after she was born, I gave Peeper her first opportunity to nurse.

Doula K, who is also a Le Leche Leader, was on hand to help, observe, and offer advice. Peeper gave it the old college try, and seemed to have a good latch and suck, but her biggest problem seemed to be that her little mouth is so tiny that it's hard for her to get much of me in it.

We gave it another shot later that evening, and Doula K said to just keep trying, and not to worry too much, because she had twenty-four hours before they expected her to really get in a good feeding.

It was sort of the same thing the next day, but she was more actively latching and sucking, and got high marks from Midwife K for that.

On Tuesday evening, when they re-weighed her, she had dropped to 4 lb 4 oz, which kind of freaked us out.

Dr. C (the head pediatrician) told us that he really didn't think she could have lost a full pound, and that he was pretty sure the birth weight was inaccurate.

Of course, we couldn't go back and redo that, but he said we'd go from where she was right then.

Long story short (see long story long in an upcoming post all about breastfeeding), Peeper had to stay in the hospital til she could prove that she could eat and gain weight.

That has included a bit of actual breastfeeding, a lot of breast pumping, and feeding her the expressed breast milk, first through a supplemental nursing system at the breast, then finger feeding with the SNS and finally, with bottles. We've used a tiny bit of formula, when I've not been able to keep up with her needs, but the vast majority of her nutrition is coming from breast milk.

The bottles were added when we were seeing that her blood sugar was not staying high enough between feedings, indicating that she was having to work to hard to get the milk from the SNS, and wasn't getting enough net calories.

Once we went to them, her sugars came up and the doctors were thrilled.

Since we've been home, she's increased the amounts she's eating (increased a lot in the past couple of days) and seems to be gaining about an ounce a day right now, so that's great.

She's still not so keen on actually sucking and getting milk directly from the breast and, as a friend of mine said recently, "the breast pump is not the most gentle lover," so that part's not so great.

We understand that most babies at her gestational age are not mature enough to actually breastfeed on their own for a while, so I've made my peace with this being the way it is for now, and I'm hoping that she'll continue to improve during our "practice nursing" sessions, and that she'll be ready to do it for real in a few weeks, maybe by her due date.

This is not what I'd envisioned our breastfeeding relationship to be, but I'd also not envisioned her being born four weeks early, so we've just got to play the hand we've been dealt.

Issue 2 - Jaundice
This one really isn't such a big deal, more of a bump in the road. The pediatricians said that they'd actually be surprised if a 36-weeker weren't jaundiced.

Peeper spent a couple of days under the bili-lights, and that helped. Her bilirubin went back up a bit once she was out of the lights, but now it's headed back down and the doctor doesn't see a need to test it again.

The biggest problem is that the increased bilirubin made her lethargic for a day or two, so it was very difficult to get her to eat. See above.

Issue 3 - Temperature Fluctuations

This is to be expected with preemies as well, but again the problem is that if she's using all her energy to stay warm, she's got none left for eating.

Issue 4 - Heart Murmur

On Friday morning, the pediatrician noticed "a little murmur" which had not been heard before. She seemed reassured when we told her about the echocardiogram that we'd had at 25 weeks, but decided that she should have another one done, to see exactly what was going on.

Yesterday, one of the pediatricians called to say that they'd gotten the report from the echo, and that "The pediatric cardiologist said that it's probably not anything that you'll have to do anything about, but he wants to see her. We've made you an appointment for tomorrow at 1:20 pm."

Whoa. That kind of freaked us out a bit. Doctors never see you tomorrow.

Of course, the pediatric cardiologist is in CapitalCity, an hour away. Ugh.

We saw him today, and he did another echo to clarify what's going on.

It seems that Peeper has two small holes in her heart.

The first is just one that's normally there in fetuses, between the two atria (upper chambers). It usually closes at birth, but sometimes takes a little longer to close, especially in preemies. This one is nothing to worry about.

The other is between the two ventricles (a ventricular septum defect) and is of more concern.

The hole (which is 4 mm) will not get larger, and it will get relatively smaller as she grows.

It may also get absolutely smaller. About 80% of these holes completely close up before the kid is three years old. Others never completely close, but get small enough that they don't cause any problems at all.

The ones that don't shrink can cause breathing difficulties, because blood from the left ventricle (under higher pressure) leaks into the right vetricle, and increases the volume of blood that it's sending to the lung.

Again with the eating thing. If she's using extra energy to breath, she will use less energy to eat.

So, we'll be watching her eating and weight gain, as well as keeping an eye on her breathing.

If she's not growing quickly enough, we can increase her calories by fortifying the expressed breastmilk, and we can counter the "wet" lungs with a diuretic like lasix or a blood pressure medication.

If the medication and increased calories were not to do the trick, the next option would be a surgical repair.

He assured us that, while open-heart surgery on an infant sounds awful, the risk of the surgery is actually comparable to an adult having their gallbladder removed, and she'd be in and out of the hospital in about a week.

We certainly hope it doesn't come to that, but the upside of surgery would be that then it's fixed, and that chapter is closed.

Issue 5 - Questionable Metabolic Testing

All newborns are tested for PKU and about 50 other metabolic diseases. On the first test (blood drawn about 24 hours after birth), her level of tyrosine (an amino acid) was high.

The doctor told us that this ofen happens with preemies; their little systems just don't have it together yet, and some of the numbers come out funky, but are okay when the test is repeated.

The doctor called this afternoon to tell us that the values are still high on the repeated test.

This could still be because she's a preemie, or it could indicate a metabolic disease, most of which seem to be controlable with diet.

That's no trivial thing, though, as (I think) it means removing a large number of foods from the diet, in order to avoid taking in certain amino acids.

The alternative is that if you do take in those amino acids, you end up with some nasty metabolic by-products that cause things like developmental delays.

So, little Peeper has yet more labwork in her future - both blood and urine - to determine whether she's just got funky preemie numbers, or if she actually has one of these diseases.

They'll call tomorrow to set up a time for us to get a urine bag (tape it to her and it will catch the urine) and then we'll turn it in and get her blood drawn. Unfortunately, that will have to be a vein stick. Poor baby.

In order to sort out what the test results mean, they are sending us to a metabolic specialist, who is about four hours from home. Someone will also call us tomorrow to set up that appointment. I think it will happen after the bloodwork is back, maybe in a week or so.

In Summary

Since about the sixteenth week of my pregnancy, we've been hearing about things that might be wrong with Peeper, only to be told later that she is, after all, just fine.

We kind of assumed that would end once she was born. We were very wrong, and it's getting really old.

We are really tired of learning about more and more and more possible problems that she might have, every time we turn around.

At this point, the heart defect is almost the "no big deal" option, because worst-case, it could be repaired surgically, and then it's done with.

It's the metabolic thing that worries me the most right now. Those diseases can be quite serious, and the diets required to control them can be quite restrictive.

We've done a lot of talking about what this all means, and why all this might be happening to us, and to poor little Peeper, but I'm way to tired right now to even try to think about it.

For now, we're just continuing to feed her and grow her, and we'll check her weight on Monday, see the cardiologist again next Wednesday, and wait for the lab results on the metabolic testing.

In the meantime, we really need your thoughts, prayers, positive energy, good vibes, healthy-baby-mojo and whatever else you've got to offer.

That's what got us through that week, back in June, when we were so worried about a possible neural tube defect, and that's what will get us through this.

Yes, We Did

Scenes from our local Democratic Party's Election Night celebration.

(I went while Shrike and Peeper stayed home.)

Organizing My Thoughts

As you can imagine, everything since Peeper was born has been something of a blur for us, especially the first six days, which were spent in the hospital. 

I'm sure that my vast blog audience will understand that I've been too busy most of the time to stop and document much of it here, and will forgive me for the rather sparse details, so far. 

I promise that there are several potential posts percolating in my brain, addressing a variety of specific aspects of the past week or so, but it's been a bit daunting to get them all down in pixels. 

Some of the things you're likely to be reading about here in the next few days or weeks, are (in no particular order): 

• Our birth story
  
• Our (wonderful) experience with the staff at OurTown Hospital
  
• Peeper's various health concerns during her first week in the outside world (most or all of which seem to be mostly or completely resolved)
  
• Breastfeeding a near-term preemie: Technical issues
  
• Breastfeeding a near-term preemie: Emotional issues
  
• Doulas: Why you should hire one
  
• Doulas: Why you should hire mine
• Bringing Home Peeper: The "new normal"
• Shrike: World's Greatest Birth Partner
• Shrike: World's Greatest Mom

At risk of being a copy-cat (I believe it was OneOfHisMoms who did this), what would you like to hear about first? 

Get Out The Vote

(Note: John McCain supporters are excused from reading this post. Nothing to see here. Please move along.)

Today's the day, fellow Democrats!

If you're already helping to get out the vote for Barack Obama, way to go!

If you're not, please considering taking some time - even an hour would help - to volunteer with your local Obama campaign office or Democratic Party.

Over the past few months, the campaign has compiled a huge list of voters who've said they are supporting Sen. Obama, and every single one of them needs to hear from us today, with a reminder to go vote. 

The polls are looking very positive, and many new or occassional voters are likely to think, "Oh, we've got it made, there's no need for me to bother voting," but if enough of them think that way, we can - and will - lose this election. 

To to BarackObama.com to find the nearest campaign office, and call or show up right now to find out what you can do to help. 

Please help today, for her tomorrow. 

Steppin' Out

Peeper had her first big outing today, to have her blood drawn for another bilirubin test (up a bit, but okay, will recheck on Wednesday.), then to the pediatrician (gained 2 oz since Saturday - now 4 lb 8 oz!), then the pharmacy (for Mama, not her), then the OB's office to drop off Aflac forms and show her off, then back to the pharmacy to pick up a prescription, and finally to hang out in the grocery store parking lot with Mama while Mommy picked up a few necessities.

Whew.

Let's just say that Peeper held up a lot better than I did.

Of course, one's first big outing requires a super-cute outfit. This is one that Shrike's parents picked up for her yesterday.

Size? Preemie. Fit? Baggy.

Belly Shot 7: Before / After

Before: Monday October 27, 2008, around 5 am
On our way to the hospital


After: Wednesday October 29, 2008
Checking out of the Labor & Delivery Ward, taking Peeper to the Pediatrics ward

We're Home!

I'll write more later, but the short version of the story is that Peeper was discharged from the hospital this afternoon (technically yesterday - Saturday - afternoon) and we got home around 4 pm .

We've mostly been eating and sleeping since then. 

Shrike and Peep are asleep on the couch now, and she's not due to eat again for another hour (unless she gets hungry sooner, of course) so I should go try to catch a couple of Z's til then, mysef. 

Auntie Ladykay says...

I hear tell that Peeper has been discharged and they are on their way home!