Unexpectedly Expecting

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.

Caution: major confusion zone ahead

I am still pregnant.

But it sounds like I'll be a mother by end of the week.

That was the story after meeting with my OB on Monday morning. After four days of wondering about Luke's small size and his general well-being, I had a lot of questions. I didn't understand why one doctor last week seemed to think we should be induced if his growth fell off and then no one seemed to actually care when it did. I didn't understand how falling into the fifth percentile from the 15th represents and adequate growth change. I went in thinking I'd agree if they wanted to induce me, although a large part of me is quite wary of the entire induction process.

I know a part of me has given in to a sense of fear, of wanting to know that he's OK and therefore getting him out of there and into the world ASAP. Another part of me is very aware, after scouring the internet, that inductions are harder on most women, that they lead to two or three times more C-sections, and are altogether a much less natural choice than spontaneously going into labor when your body and baby are ready. A big part of me really wants to experience that and worries what will happen if I try to force Luke into a labor he's not really ready for. But I think the part of me that is scared is winning out right now. The part of me that just wants to see he's all right.

The doctor yesterday confused us even more. At first, she said she didn't see any reason to induce now,  explaining the dangers of C-sections and intense, longer labor. I began to accept that it wasn't going to happen. I brought up that a doctor last week said he wouldn't want us to go past the due date. And she said, yes, that maybe at or just after our due date, induction should be done. She kept talking about it like it is some day way in the future. We pointed out that our due date is in three days, and she was like, right, so maybe we'll induce at the end of the week. That, she said, would be reasonable.

Why is inducing in four days reasonable when it wasn't reasonable Monday? I don't really understand that. If there's a real medical need for it... isn't that need there now? What will make it suddenly appear at the end of the week?

I also tried to get her to explain clearly why his growth dipping isn't a concern. Her answer? That he's passing his biophysical profiles and non-stress tests, and that it's not as if he isn't growing at all, that the rate is really close to in line with where he's been for the last two months. So his growth is fine.

But it's still enough of a concern to induce me by the end of the week? Of course! Doesn't that make sense?

I really want to do what's best for Luke.  I wish I had more faith that everything is OK in there, and that natural timing -- God's timing -- is best. I read things like this and feel guilty that I am thinking induction at all. It doesn't help that my doctors don't give me a clear idea about their feelings. It also didn't help when I volunteered Monday to get an ultrasound with a fancy new machine at the hospital, in the name of medical research. The doctor who swabbed me took a long look at the heart, since he's done me before and knows about Luke's issues. At first he said he thought the hole in the heart is either gone or very small, and I laid there silently thanking God in my head. A few minutes later, he switched to a different viewing mode and said, "Oh, there it is." He measured it at half a centimeter, much bigger than we ever thought it was before. So there's that, too, the knowledge that his ventricular septal defect is in fact still there and is sort of big.

I just want to get him out of there so we can start learning which of these issues is something to really worry about and which is perhaps nothing.

My deepest hope is that I'll naturally go into labor before the induction, which has yet to be scheduled. If not, I'll go along with it, right or wrong. But I really hope that's the right decision.

The question of induction

I've spent the last two days thinking long and hard about induction. It started on Wednesday, when at my regular OB checkup, one of my many doctors asked whether there had been any talk of it. I told him no and asked whether there's any good reason to induce, and he said that because of Luke's growth issues, they probably don't want me to go past my due date. He asked me to make an appointment for early next week to come in and talk about it again.

"Especially if his growth falls off any more," he said, "we'll want to get you induced."

I left feeling quite conflicted. On one hand, I am so ready to meet this baby, and it'd be nice to know exactly when it's going to happen, and, on a totally selfish note, the earlier I have him the more likely Jimmy -- and maybe me, too -- will be able to attend a wedding of one of our really good friends. But on the other hand, a lot of what I've read about inductions is negative. I've read it can make labor longer and harder. It's obviously more unnatural. It seems like a much better idea to wait until the body and the baby are naturally ready for labor unless there is a good medical reason to get him outta there pronto.

After doing my typically Google research, I decided I would resist induction, unless my doctors could convince me they had a great, urgent need to call for one.

Then Thursday, I went to the hospital for my weekly bio-physical profile. I knew they planned to do a growth check during the ultrasound, too, as it had been three weeks since we found out he weighed five pounds, five ounces and had risen into the 15th percentile. After he passed his BPP with flying colors once again, the ultrasound technician took measurements of his head, chest area and thigh bone, typing numbers into a computer. Finally, she said, "Well, I'm measuring him at five pounds, 15 ounces."

"That seems small," I said. I'd fully expected him to be up to six pounds, at least. I realize he's right there on the threshold, but just to hear the words "five pounds" again made me nervous.

She left the room then to consult with a doctor. When she returned, she said I was free to leave. I asked her -- for the second time -- what percentile he is now in, and she told me that he's now in the fifth. As in, 95 percent of all babies at 39 weeks are bigger than him.

"Isn't that below normal?"

"Yes," she said.

"My doctor told me yesterday that if he fell off any more, they'd induce me."

She considered this and left the room again, to talk with the doctor. Then she came back and said the doctor there was calling my own doctor. She shuffled me down to a waiting room and instructed me to answer the phone on the wall if it rang. I thought for sure that I was going to get a call saying, "Stay. We want to get him out of there." But about two minutes later, the phone rang, and the doctor told me she thought there was no reason for induction, that his growth is "appropriate" considering where he had been before. She said last time, when he rose into the 15th percentile, was more of a deviation from his norm than this time. I don't really get that. Then she asked how much I weighed at birth.

"Eight pounds, four ounces," I said.

"Oh," she said, sounding surprised at my normal size.

"What about your husband?"

"Seven pounds, I don't know, five ounces?"

"Oh. Are you a smoker?"

"No," I said. "I've never had a cigarette in my life."

"Hmm," she said. Then she told us that since he passed his BPP, she thinks he's doing fine, and she released me. When I told Jimmy about all of this, he said, "It's not very comforting when one of the first things they do is ask whether you're a smoker."

Exactly.

I'm trying not to worry, and I'm still feeling pretty calm. But I do know this -- if they want to induce me, I'm down. I just want to see that he's OK. I don't understand why he's so small. I worry that there is something larger going on, a bigger problem that connects all the dots of his small size and his heart problems, some chromosomal issue that is going to become obvious after he's born. I feel like whatever is going on, we can get a better idea of it when he's out of there. My hope is that I'll still go into labor naturally -- soon, as in, right now would be a fantastic time! -- but if it doesn't happen, I'm going to have a nice talk with my doctors on Monday and see what they say. If they say wait, I'll wait. I need God to summon my patience up in the worst way. I believe his timing is best. I know this is all in his hands.

But I also know I will feel much better about everything when I see the little guy is OK for myself.

If anyone out there wants to share stories about induction, pros, cons, whatever, I'd love to hear it.

Optimism

I slept fitfully last night, mainly because I was too hot, but also because my mind was playing all sorts of tricks on me. Somehow, in a very sleepy state, I began wondering whether I was having contractions although a) I wasn't in any kind of pain at all and b) Um, no, I wasn't. I don't know if it was wishful thinking or crazy sleepy delusions or what, but once I started thinking about contractions, I could not fall asleep. I tossed and turned until about 2:30, until I realize Jimmy was up shutting windows. "What are you doing?" I mumbled when he returned. "Trying to make you comfortable," he said. "You've made it pretty clear that you're not what with your thrashing around and sighing."

He turned on the air conditioning for me. He really knows how to speak my love language.

I slept better after that, but my mind really never shut down all night it seemed. One thing it came back to a few times was something a woman said to us yesterday at the veterinarian's office. The woman behind the desk had asked when I was due, and another woman had crowded into our conversation as she checked her dog in. "That's very optimistic of you," she said, meaning having the baby. Jimmy and I looked at each other, puzzled, as she repeated herself. "You're assuming we planned this," I joked. The women laughed, but then the one said, "Well, it's optimistic of you to keep it then."

Now... is that a weird thing to say or what?

What did she mean? That these are such bad, dark days that procreating is the ultimate sign of optimism? That our world is going to such hell that no one but a true optimist could ever see it fit to bring a child to life? I guess that's the way I took her comment. And that strikes me as a pretty sad outlook. I realize times are tough, especially here in Michigan, where jobs are being cut, where young, talented people keep fleeing, where housing prices continue to drop and homes sit on the market for years, where foreclosures are a way of life, and where there is little sign of anything changing soon. I have to admit, though, that even in my skeptical first few months of pregnancy, never once did I think that the world was in such bad shape that I ought not even considering having children.

As a Christian, my viewpoint is a little different. I see the beauty of God everywhere -- in nature, in kindness, in love, in family and friends. I see a future that is by no means going to come without suffering, but one that will be worth it because God will be there for it. And I see an eternity that has nothing to do with the current economic status or climbing gas prices. To think of living my life out of fear of the future or fear of the present situation, without any trust that there is something bigger at work and someone much, much greater than me and the government in charge, that's just sad, sad, sad to imagine. I know the world Luke's coming into isn't perfect. And his life won't be either. I still think it's a life worth living.

I guess if that makes me an optimist, so be it.