Unexpectedly Expecting

Eating like a champ

It didn't take long to figure out whether that lactation consultant was worth it. Luke is taking the boob!

It really has been an amazing turnaround, from not wanting anything to do with my nipples to breastfeeding pretty much like a normal baby. I guess the one visit with the consultant made him realize that milk really does flow in them there fleshy hills, and now when I put him on, he sucks like mad. The only problem now is that for Luke, "sucking like mad" isn't really much of a suck. It takes him much longer to get a significant amount of food from the breast compared to what he can do with a bottle. But that's simply a matter of working with him to get stronger. In two days, he's already improved -- I know because of the handy dandy scale in my kitchen that tells me exactly how much breast milk he's getting. At first, he'd need about half an hour to get an ounce, and then I'd give him the rest of his food by bottle because I don't want to tire him out. Now, he's picking up speed, and in 40 minutes, he can pretty much suck out two ounces of the good stuff. That's close to a full feeding!

I'm amazed at how quickly he's caught on. Another answered prayer, no doubt.

We also had our first visit to the cardiologist on Thursday. They did an echocardigram of his heart, and everything still looks great. The biggest things moving forward will be for him to continue gaining weight and for his blood pressures to stay even throughout his body. About one in 10 children who have had his surgery need another procedure because the coarctation -- the narrowing on the arch of his aorta -- reoccurs, usually in the first year. The way to watch for this is to take a blood pressure reading in the arm and one in the leg. They should be pretty similar. If the pressure in the lower half of his body drops, it could be a sign that something is happening with that arch because that's what delivers the blood to the bottom half of the body. Yesterday, his number in the leg was indeed lower than the arm, but not significantly. Still, it's something we will have to pray about through this first year.

Otherwise, Luke is doing so well. Everyone has been amazed by his recovery, especially his feeding success. It's just not that common for a baby who has been through what he's been through to pick up both bottle feeding and breast feeding so easily. The only thing I worry about is his gas and reflux. He spits up often and it seems no matter how much I burp him, he's still troubled by gas. This happens especially at night -- he'll eat and I'll burp him and then he'll proceed to grunt as if he is in pain for the next two hours. It makes sleeping quite difficult -- for me. Maybe for him, too, but really, it looks like he's sleeping right through all the noise-making. I'll wake up to burp him and won't get anything, then I'll lay him down and the whole thing will start again. Maybe I just need to work on my burping technique? Or maybe he just like to make really loud, painful-sounding animalistic noises as a means of entertainment? I'm stumped.

Stumped, but overall, quite blessed to be mothering a boy who is doing so well.

The battle of the boob

Slowly, I'm getting the hang of things. I've managed to catch up on my sleep, which helps in every way. I've figured out how to take advantage of Luke's naps to get things accomplished. I've stayed pretty patient when he bawls his little head off. I'm learning, and for the most part, I'm doing just fine.

There is one area I want to work on. Breast-feeding.

Right now, Luke's addicted to the bottle. We were so eager to wean him off his nose tube that when he started taking a bottle, we made it our only goal to re-enforce that. The result? He loves the bottle, he's gaining weight, and everyone is happy. Except that I am still spending my days pump pump pumping away and every time I try to offer Luke my nipple, he acts like I'm trying to get him to put a burning pile of poo in his mouth. He pushes me away and turns beet red and flails his tiny fists at me. Let me tell you, it's not a great feeling to see your adorable baby using all his little might to try and attack you. It seems that we were a little too good at re-enforcing the bottle, and now the idea of sucking much harder to get a natural flow coming from a breast really pisses him off.

So today, I set up an appointment with a lactation consultant at the hospital. I schlepped myself and the baby and all his doodads to a 1 o'clock appointment that I hoped would crack the code and get him moving in the right direction. Luke did his part  -- he got hungry right on cue and then stubbornly refused to have anything to do with my nipples. The consultant repeatedly tried shoving his little head onto my boob, only to have him scream and scream and scream. She tried a nipple shield, to no avail. She then said she had one trick left to try. I'll have to wait and see to know if i was worth the $80 session fee, but it seemed like a good start. The magic key was a tube contraption called an SNS that lets milk run down to my nipple so that there's a flow as soon as Luke starts to suckle. With that in place, we finally made some progress -- after a few hissy fits, he latched on and started sucking. We weighed him afterward and learned he'd taking in about 1.5 ounces. The consultant was pretty sure most of the milk he got was from the tube, but still, he was on my breast, sucking. That's a big step.

Then I came home and set it all up to try myself. I had trouble keeping the slippery little tube -- it's about the width of thin piece of yarn -- on my nipple and in his mouth. But! He sucked anyway! So I left it out and let him go to town, noticing how his jaw was moving the way it was supposed to and listening for gulping and swallowing sounds. Check and check. I thought my little guy was a star. Then I plopped him on the scale they sent home with me and found out that after that 20 minute session of what I thought was successful breastfeeding, he actually lost 1.2 ounces. Meaning, he expended more calories sucking than he replaced with milk. Meaning, he probably didn't get much milk, if any at all.

That was demoralizing. I'm not sure why it seemed like everything was working right only to find out he was swallowing...nothing? I don't get it. The consultant didn't have any immediate answers when I called and asked her what was up. I'm going to keep trying throughout the day and see if we get anywhere.

I am determined to breastfeed this baby. I don't want to pay for formula. I don't want to spend the next few months pumping. I know breast-milk is best. And simply put, it's just something I want to experience, a bonding thing. Or maybe a woman thing. A natural thing. I just wanna do it.

So we'll keep trying. And in the meantime, I'll keep in mind something a new friend told me -- heart babies aren't like regular infants. He's been through a lot, and it's going to be harder to do some of these things than it would be if he were a regular healthy baby. I have to give him -- and me -- time to grow and to learn.

It'll happen.

Last Friday, after a day of pleading and begging with a team of nurses and doctors, Luke was discharged, and we came home. I would love to write all about what a great feeling that was -- and it was a truly fantabulous feeling -- but I am operating right now with somewhere in the vicinity of 12 brain cells. Case in point -- the day after getting home, I made a Target run because we desperately needed food and diapers (all the diapers I stocked up on before the birth are too big. Go figure.) I spent a good 45 minutes cruising the aisles, throwing in everything we needed from thank you notes to another nursing bra to Gatorade and EL Fudge cookies. With my cart cull, I pulled into a check-out lane and arranged everything on the belt. About half of the order was bagged when I reached into my purse for my wallet and realized it was at home, in my other purse. I only had a $50 gift card to pay for about $150 worth of crap. So one-by-one, the cashier had to take items off my bill, until eventually I left with only the diapers, breast-milk freezer bags and $20 worth of pictures I'd had printed. The rest of my loot was left on the belt as I hustled away, embarrassed and angry that we'd have to go another night without snacks.

So, yeah, I'm sleep deprived and just hanging on. I haven't really been able to process anything at all as we've transitioned from simply having a baby to truly taking care of a baby. A few people during my pregnancy reassured me that taking care of a newborn is not as stressful or hard as popular convention would lead one to believe. I always appreciated those comments and took them to heart, convincing myself that indeed it wouldn't be that bad. I don't want to say that those people were liars, but perhaps it simply matters what your specific circumstances are. Or, well, they were liars.

What are our circumstances? They're probably not really that difficult, but we take our time adjusting to change, especially my husband, who said the other day that while my life changed drastically during the pregnancy, his really hasn't until now. It's all hitting him at once. It's somewhat easy to deal with those changes when you're not working and you're fully consumed with the baby because you're living at the hospital where he's having surgery. The distractions of everyday living are funneled away. Now, we're home, he's working, and we're trying to figure out how to live as close to our old patterns as we can while adding in our new parenting duties. You can imagine how that's going.

Luke's on a strict three-hour feeding schedule, and I'm still pumping eight times a day because it doesn't seem like breast-feeding is going to work out, and we're trying to slowly decipher what all of his cries mean. He gets majorly fussy a few times a day, and we don't really know why. It's behavior we never saw at the hospital. So we're overwhelmed a bit. But of course, this is the way things go, and this is what we wanted so desperately while we were stuck in the hospital. I'm not forgetting that.

In the meantime, until I get into a groove and get some of my brain back (I assume at some point that will happen, right?) here are a few photos from Luke's stay in the hospital.

This is what he looked like immediately after the surgery.

Close to all better...

There really is no place like home

So. It's been five days. A lot has happened.

We left the ICU (actually the PCTU -- the Pediatric Cardio-Thoracic Intensive Care Unit) on Sunday evening. Our new home is the "floor," the general care area where children of all ages are recovering from all sorts of maladies and surgeries in stable condition before they go home. General care is much different than the ICU and, in a way, it's equally stressful. In the NICU, the stress was dealing with the idea of doctors -- very capable ones, sure -- cracking our sons chest open. It was knowing there was nothing we could do or say to prepare him, because he wouldn't understand. It was wondering whether he knew we were there, that we loved him, that the world wasn't such an evil, awful place where people are constantly poking and prodding and picking you with needles. It was totally helpless and emotional. But on the bright side, we had awesome nurses standing by his side day and night on a one-to-one ratio. That was reassuring and allowed us to get (some) sleep. The stress in the PCTU was much lower. We were through the surgery. The hard part was over, and that was a huge weight lifted.

The "floor" is a totally different beast. One of needs to be there pretty much all the time. The nursing ratio is like one to four. And there is a bench/bed thingy, which I'm sure you can guess is not that comfortable, so a parent is "encouraged" to spend the night. The nurses just pop in and out to switch IVs or check vitals or do feedings. The rest is up to us. In a way, it's good, because this is our baby, and we need -- and want -- to take care of him. But it's also stressful. It's one thing to do this at home. It's another to do it in a hospital, where people are constantly coming in and out, and we're exhausted after all we've been through, and we don't have our own bed to retreat to. We were also feeding him at first every hour, which as you can imagine, is a lot of feeding. And I'm pumping every three hours, and different people -- lactation consultants, nurses, nurse techs, nurse practitioners, social workers, oral therapists, discharge planners, floor hosts, volunteers, janitors -- are constantly stopping in, needing to talk or get at the baby or have us get out of the way. And we've had lots of visitors, which is also good and bad. Of course, we love that people love us and want to support our baby and us. But all the socializing gets tiring. The other thing is, we're in a shared room, so the baby next to us also has all those people coming in and out, and a mother sleeping over, and crying fits. It's just a lot to deal with at once.

And we made a big mistake on Sunday. We gave up our room in the hospital hotel. Really stupid, we realize now, because it means one person is staying by the bed all night and the other goes to a friend's who has graciously let us crash in his posh basement. That person winds up well rested, while the other ends up totally exhausted. If we were still at the hotel, which is just down the hallway, we could do shifts. Everything would be much more manageable. We are dying to get back in, and we're first on the wait list. Cross your fingers.

Of course, the goods news in all of that is that Luke is doing well. He has had no issues with his heart since the surgery. He's slowing taking in more feedings, almost all through a naso-gastric tube (a tube in his nose). They took him up slowing because of the issue with his stomach after surgery. But he's now up to eating 45 milliliters of breast milk every three hours. And he's finally off of oxygen.

They're telling us we should go home this weekend. We don't know if that's Friday, Saturday or Sunday. My guess is Saturday. I really hope so.  Really, really, really. And I really hope that we get back into the hospital hotel. Please. Let us back in!

The other great thing is that now we can hold Luke whenever we want. We change his diapers and feed him and clean him and console him and do pretty much everything parents get to do our in the real world. That feels pretty good. Makes being here bearable.

Still... I can't wait to go home!

Good news keeps on coming

Since Thursday's surgery, Luke's recovery has been fantastic. Since the wo scares immediately afterward with some bleeding, he's flown along. In one day, he got off all three of his blood pressure medicines. They've scaled way back on his morphine. They've got him "dry," meaning they've forced him to pee out most of his extra fluid, showing that his kidneys are fine.

And last night, they took him off his ventilator! He's actually getting better "numbers" OFF the ventilator than he had on it! Today they're planning on taking out the chest tube that has been draining blood out of his chest, and there is a chance he will move out of the PCTU (the ICU for kids with heart surgery)! If he doesn't move to "the floor" today, it'll be tomorrow. That's fantastic, considering we were told he'd spend a week recovering in the ICU alone. I'd say at this rate, we should go home this week!

Good news all around. I feel amazingly better. The lead up to surgery was so much scarier and nerve-wracking then dealing with getting him all better. And he looks like himself now -- pink and cute and not puffy. He's opening his eyes and staring at us, which makes me so happy.

I know so so so many people have been praying for him.  I can't thank all of you enough.

Feeling much better

Yesterday was bad, the low point, I presume. Even though surgery went well, it was so draining to sit and wait for it to end, and it was nerve-wracking to wait so long to see him afterwards (about four hours more). It was gut-wrenching to hear twice that he might need more surgery to correct bleeding problems. It was emotionally and physically exhausting all-around.

But today, the clouds have parted quite a bit. The bleeding from his chest tube finally slowed down and after a few X-rays to make sure that wasn't due to a clot, the doctors seem satisfied that the problem is in the past. They were worried that blood was collecting in his chest cavity, but for now that seems to be a non-issue. They were also worried about fresh blood that was coming out of the tube stuck down his nose that runs into his stomach. They thought maybe the tube had punctured the lining of the stomach, a problem they'd have to correct with surgery. A chest X-ray revealed that he has a blood clot in there, and no one is sure why, but they're also not overly concerned about it. They think maybe there was in fact a puncture in the stomach but that it was self healed. He'll be getting additional X-rays throughout the day to make sure everything is alright.

He's still on a breathing machine and will be for probably another day or two. His lungs have a little too much liquid around them, and they're giving Luke two medications to try and get him to pee more. Apparently after open-heart surgery, the kidneys go on a little vacation, and they're trying to rev them back up. If the urine output doesn't increase, and the echo shows a little too much fluid, they'll either drain some by sticking him with a needle and syringing some out or they'll insert a small tube into this chest.

Luke's hooked up to what seems like a billion machines. Wires are everywhere criss-crossing his little body. He's much more pale then he was before (he was a jaundiced and the blood transfusions from surgery take care of that). And he's puffy. But he's also still adorable, at least to me. He's still not fully awake yet but he responds to our touches and voices, he moves around a little, he sucks on his breathing tube and he even opened his eyes once or twice. Seeing those things makes me feel so, so much better.

Last night, I got about six hours of sleep -- by far the most I've had since the delivery. It was much needed, and I'm feeling a lot better today. Still tired, but much better. Jimmy's struggling with exhaustion, too, and he's napping right now. They kicked us out of the room because someone in another bed was just wheeled in from the OR.

I just want to say again how uplifted, buoyed, and blessed I feel for all the support, encouragement and love we're getting from all over. This has been so difficult, but all along, I've also felt a sense of peace that everything will be OK. I can't explain that as anything other than God's strength filling me.

We have probably around two more weeks to go before we can go home. Maybe just 10 days. They said he'd probably stay in the PCTU (an intensive care unit for kids with heart surgery) for a week post-op and then we'll move to moderate care for a week. I am looking forward to that more than anything right now. We'll have our own room and we'll get to start to take part in Luke's care. I'm itching to get to be his mommy, more than just cupping his head and holding his hand.

If you'd like to pray for us, here are some requests:
1). That his blood oxygen levels start to improve a little.
2) That the fluid around his lungs drains out without him needing to get a tube inserted into his side.
3) That he begins to initiate more breaths on his own -- this would be a first step to getting off the ventilator.
4) That we find ways to get rest!
5) That his nurses and doctors continue to take great, attentive care of him.

Sorry I haven't updated. Time slips away here. You'd think I'd have lots of time, but each day until now passed in a blur of sitting with Luke, talking to nurses, meeting with doctors, finding food, breastpumping and attending to visitors. Sleep has come in short chunks here and there. I am exhausted. And I'm emotionally a wreck.

Today was his surgery. That itself went very well. His heart looks "beautiful" according to one of the cardiologists. They pathed two holes, gave him a newly made arch in his aorta using parts from human cadavers, and cut away a part of a muscle that for some reason was going to be a problem if left in. It was supposed to take four hours, but it was more like three.

Watching him be wheeled away into the OR was the toughest moment of my life. They let us hold him for about 90 minutes before he went, and in that time, he'd slept peacefully in my arms, like a newborn baby should. Then they put him in his little incubator and wheeled him away, his face red, his tiny fists rubbing his eyes. Before they took him through the doors, I stuck my hand in through the hole on the side and rubbed his head goodbye, and he calmed down a little. Then he was gone.

His looks awful now. Machines everywhere. He's on a ventilater. There's a big tube draining blood out of his chest, and apparently, he is bleeding too much. He's had several transfusions and doeses of clotting agents, and it still wasn't slowing as much as they wanted it to. They told us if it doesn't get under control, they'll need to open him again to stop it. He also has a tube down his nose going into his stomach, and it's supposed to suck air out. It's bringing up fresh blood, which is perplexing everyone. He went for a chest X-ray and I'm waiting to here what the verdict is. There's a chance his stomach is punctured and he'd need surgery to fix that, too. The surgeons are all on standby.

I feel really weak and hopeless and sad. I believe in the end Luke will be OK and we'll take him home and we'll all get through this. I just hate, hate, hate that he is going through this at all. I can't stand it. I look at him and tears immediately fill my eyes. When I close them to try and sleep, all I can picture is him sucking on my finger or holding onto my hand, the peaceful moments in the NICU that became more and more frequent from Sunday through this morning. I love him fiercely, completely, and I just don't know how you're supposed to stay strong for something like this.

I will say that people in our lives -- friends, family and co-workers -- have been wonderful. We've had offers of help from all over. Places to stay, dinners, money, lawn cutting, cat sititng, everything. I feel so blessed in that sense, and it truly helps to know so many people care.

Right now I just want to get through the night, hear some good news hopefully. Hopefully. Then maybe each day will get a little bit better.

Here he is!

A quick update -- the short version.

Luke was born at 9:52 a.m. on Friday morning after a whirlwind labor-- so fast I couldn't get the drugs. He was taken to the NICU right away for evaluation but was brought to us in the afternoon. He spent the night in our room. He is the cutest baby ever.

On Saturday afternoon, a cardiologist came to our room to take a second look at his heart. At that time, he realized Luke's heart issue was more serious than we thought. He was taken back to the NICU and then took a helicoptor ride to UM. I was released, and we drove down here. Around midnight, the cardiologists finished looking at him and took us he has several problems. He has two holes in his heart -- a ventricular septal defect and an atrial septal defect. He also has at least one narrowing in his aorta. It's called coarctation of the aorta, and it's the most serious of the problems.

He will need open heart surgery soon -- probably in the next few days. Right now, he is doing well. For all those heart problems, he isn't showing any signs of problems yet. He's stable and in good hands.

We are staying, for one more night, in a room right on the NICU floor. Then we'll not sure where we're going -- maybe the Ronald McDonald House.

Prayers are much appreciated -- and felt. I know God is with us now more than ever. I thank Him that Luke is doing as well as he is and that we had the gift of one full day with him. I believe he will get through this just fine, but it is scary.

I'll update with more when I can.

He really is the cutest baby in the world.

Circle the calendar

Hi! It's me! Still preggo! Still nary a contraction! Can you tell I'm really excited about that from all my exclamation points?!

But the real news is the induction is happening. Thursday night I go in to the hospital around 7 p.m. When I come out, I don't know, but I better be carrying a little baby. My doctor said the whole induction process can take a really long time... like several days. And I've certainly read my share of horror stories online. I've cut myself off, though, from all the obsessive Googling. It does me no good. I've decided the best thing I can do now -- besides take care of 1,486 things that suddenly seem to need to be done -- is try and get myself in a positive, calm mood. Start out on the right foot, so to speak. No, getting induced isn't ideal, and I'm still somewhat confused over whether it is necessary. But it's happening, so I might as well go along with it.

Today I did try a last ditch effort to force my body into labor with a spicy Thai lunch and a long after lunch walk in 90-degree weather. Neither seemed to do the trick. So unless something spontaneously happens in the next 24 hours, it's induction city for me.

And that's fine. It is what it is. I'm going to make the best of it. Focus on getting to finally meet Luke, regardless of the particular details of how that ends up happening. I still feel a little bit like it's never going to happen, like this is a surreal dream and tomorrow I'll just wake up and go about my day and it won't culminate with checking into a hospital to deliver a baby. Maybe the full reality won't set in until he's laying on my belly, covering in goo, crying his little eyes out. We'll see. It's still just so hard to imagine being a mother. I don't know how I'll feel. I don't know how my life is going to change. I really have no idea what to expect in any of this.

It's kind of exciting that way.