Catching our breath

Last night was Jude's (and by that I probably mean our) best night home so far. He's on a pretty consistent 3 hour schedule at night. During the day he's closer to 2.5 or even 2 hours, but at night he lets us sleep a bit more. Bless him. Last night I was able to feed him every time he woke, and we didn't have to use the bottle we made.

We are gaining confidence each day, and learning what works for us and what doesn't. We're figuring out how the baby works and what he needs and when he needs it. I think before your baby is actually home, it's hard to read books about having babies and really understand what they mean. There really is nothing like being a parent the first time and finding yourself going from fantastic to frustrated in the same moment. We love this baby so much, and after last week, this week of no sleep and crying and discovery is really a beautiful time.

We had so many plans leading up to Jude's birth, and they had to be changed--no natural delivery, no holding the baby and breast feeding right after delivery, leaving the hospital for the first time as two and not three. The bittersweet part of all of those plans is that we didn't make many plans for after the birth. Everything now is just unfolding.

Jude

Living with Jude

I would have to say that after four days and three nights home with our baby, we are the happiest zombies in the world.

Our first night was the battle of the pacifier. In the NICU, Jude was first given a pacifier so that he could learn to suck and swallow on his own so that we could start feeding him. However, his dependency on the thing led to a terrible evening of him losing the pacifier and screaming every fifteen minutes when it fell out of his mouth. We 86'd the pacifier that night, and I think we are all better for it. We ended up with about 5 hours of sleep, four of which came all at once. Saturday morning at the doctor he weighted 7.12 lbs.

Night 2 was frustrating at the beginning because Jude wants to cluster feed, which means he was eating his meal over the course of an hour and a half in about 20 minute increments. This made for a very tired mommy and a daddy who felt like he wanted to do more but couldn't. We wanted to get more sleep this night, so we went to bed at 9:30, and with all the interruptions probably ended up with 8 hours over the course of 12.

Night 3 is where I got really frustrated and really leaned on Jon. I was sore and Jude wanted to latch and unlatch and relatch, and I was in PAIN. We went to the fridge and heated up a bottle of what I had pumped the day before and Jon delivered it. This ended up being just what I needed to recover, and it took Jude through to 8:45 this morning.

At his 9:15 appointment this morning, Jude weighed in at 8.6 lbs., and the doctor told us we can start working to end the cluster feedings. We tried it this afternoon by insisting that he eat longer instead of falling asleep at the breast and making him wait at least 2 hours before he eats again. Jude was not happy about it at first, but now he's asleep and he should be really hungry at his next feeding, making him eat longer without the battle to keep him awake. It feels like a step forward in learning about how to compromise and preserve my parts, keep from feeling a constant milk maid, and give Jude what he needs. He is obviously gaining weight!

Guess What?

We get to pick up Jude today!

More later today.

Also, I had a dream that Jude's real parents were Darko Milicic and Heather Graham. I don't know what that means.

We thought we lost you, welcome back

Well, I finally did it today. I had my ugly cry. Since Jude was born, I don't think my emotions have ever been able to catch up with the whirlwind of information my mind was trying to process. We were listening to The New Pornographers on the way back from dinner this evening in a celebratory mood. We found out that Jude's MRI showed no damage to the outside of his brain and only small "spots" in the middle parts of his brain. What this means is that we need to watch. The center of the brain controls learning, focus, memory, speech, and some motor skills. We will work closely with our pediatrician to watch for when he meets milestones. We will talk a lot about percentiles. We may find he needs speech therapy, physical therapy, reading strategies, or we may find he needs nothing. Having these thoughts along with the song lyrics led me to cry in pure relief.

The first chorus of "Adventures in Solitude" was the inspiration for the name of this post. It's the embodiment of what I would like to tell Jude today, "We thought we lost you. Welcome back." I'm so lucky that I was working so hard to get him out that my eyes were closed when they took him away. I never saw the six sets of hands working to revive him in the delivery room. I didn't have to watch while he was intubated. Looking at his first pictures and his pale little body, I finally understand how close we were to everything falling apart. Jude will be a normal kid. He will be able to care for himself, go to school, make friends, and break hearts. He's back and he's fantastic.

"Challengers" has lyrics that speak to where I think Jon and I are today. "Another vision of us, we were the challengers of the unknown...Whatever mess you are, you're mine." We feel ready to take on whatever comes our way. Parenting is all about taking on the unknown and loving your kid. I want nothing more than to get started on our life with our son. I can't wait for him to get home so we can get to know one another.

Hypervigilance Happens

We're here to feed Jude and say goodnight, and he's looking as good as ever. However, I'm as upset as I've been all day. Last night I knew he was stable, but the swallowing thing worried me all night. Now he's just as stable, but he's shivering every few minutes. The nurse, when we called her attention to it, told us that she knew and that she was keeping an eye on it. She said it was not uncommon for infants who had been through a lot of stress and difficulty to get jittery as they get tired. Jude did have a big day, we fed him, played with him, held him, messed with him, lots of stuff. I can see where he would be exhausted. Still though, anytime the EEG says watch out for seizures and he's shivering, I can't help but get scared.

I really do trust the nurses and pediatric staff here so much. they've been so wonderful with Jude and his care. It's just hard to see, and hard not to worry. When you think you've lost him once, then you get your hope back, it's precarious for a while. My brain knows this is nothing to worry about, but it needs to communicate better with the rest of me.

I really don't mean to be a downer. My spirits are good. I guess I'm tired and, well, hypervigilant.

Tonight we told Jude all about the bears he was allowed to trust and not trust.

Trustworthy:
Paddington (a gentleman)
Baloo (don't go to the jungle to see him, though)
Care (except for the one with the cloud)
Gummi (tasty)
Hair Bear Bunch (hippies)
Bears from toilet paper commercial (sellouts, but well-meaning)

Non-trustworthy:
Grizzly
Polar (except at zoo, only behind fence)
Teddy Ruxpin (actually a robot)

I admit it's getting better

Such good news today: Jude is swallowing and off his oxygen tube. He's holding his vitals very well, and at noon, they let us feed him real food! He started small, since he's never eaten anything, but he ate so well. Amanda put the bottle in his mouth and he didn't really know what to do with it for about fifteen seconds. As soon as he got a little, he sucked down all 10 cc's and burped before she even had him upright to pat him on the back. It was awesome.

We're watching now to make sure his digestive tract is working, often when infants have trauma early on, all the blood goes to the vital organs - the brain, heart, lungs, kidneys, and liver, and the GI tract gets left behind. I haven't heard that he's had any trouble keeping it down, so that's good. They'll feed him 10 cc's at a time every 3 hours today, and if all goes well, he'll get increasing amounts of milk starting tomorrow. Also, they're actually going to let Amanda nurse tomorrow, barring any setbacks (she's been pumping and saving it at the NICU, and that's what he's eating today). All such great stuff.

More good news: His EKG from yesterday showed no signs of pulmonary hypertension. His EEG showed nothing major, but did show a little intermittent activity on the left side of his brain that could potentially put him at risk for seizures. They didn't seem too worried about that, and we'll just have to watch him to make sure we catch any potential seizure activity early. They've scheduled a brain MRI for tomorrow so that we can see what areas of his brain might be damaged.

Every day we've gotten better news and again, I can't describe how helpful everyone's support has been. Thank you sincerely.

We will go back and feed him again this evening, and we'll anxiously be awaiting his MRI results. We're definitely not out of the woods yet in terms of brain damage, but today's nurse said something today that struck me at the core in reference to his ability to be happy and healthy relatively soon: that Amanda and I might need to start thinking of Jude as "a regular baby, not a sick one." Exhale.

Cue the steel drum (Feelin' Hot Hot Hot)

Jude's nurse last night and the one today decorated his bulletin board and white board with a "weather report" forecasting rising temperatures. At around 10 am, they began the warming process, and around 4:30 they took him off the blanket completely. Shortly thereafter he cam off the sedative, and the process of just watching begins.

The report today includes, good, bad, and great news:

Good: They did another EKG (unofficially described to us by the tech as fine), and they did another EEG (described as "boring," which, for Jude, is exactly what we want; it means no seizures). Also, they've all but ruled out liver, kidney, and heart damage.

Bad: He's still not swallowing. Every twenty to thirty minutes, his airway gets blocked by secretions that he hasn't swallowed and they have to suction out his nose and throat. It has yet to do any damage to him, but if he can't swallow, he can't eat; and if he can't eat, he can't come home. The nurse tonight was pretty vague on how concerned they were that he wasn't swallowing yet. She seemed a little more concerned that I was comfortable with. I have to figure that he'll figure it out, though. All his other motor functions (eyes, limbs, mouth, etc.) seem just fine, and I would think it would be a very bizarre, specific injury that would cause only the swallowing mechanism to be depressed. I don't know what I'm talking about, of course.

Also, I've yet to hear him cry or cough. All his sound are gurgles and squeaks. I'm hoping that's all a function of the swallowing. I don't want it to, but the worry about this is sticking around for me, and it's a little scary. I guess I'm starting to feel like we've had such a run of good news that we're due for some bad. Of course, I know I'm a statistician and that doesn't make sense :)

Great: WE GOT TO HOLD OUR BABY. AND CHANGE DIAPERS. AND DIDN'T GET PEED ON. The view from above is so much better than the view from beside. I found myself just babbling about anything and everything, like I wanted him to learn everything I know tonight. Great times. And seeing Amanda hold him felt incredibly right.

Speaking of the mrs., I'm so proud of her. I think this is all starting to catch up with her physically, and I hate it for her. She's pumping every two hours, which is way more demanding than we expected, I think, and between that and going to see the baby, resting, and eating, it's very hard for her to maintain a balance of baby care, getting enough calories (for nursing), eating the right foods (for her prescribed diet after her injury), getting enough fluid, and getting enough rest. She's amazing and doing it all, but we need to consciously take a breather every now and then.

Sorry about the length of this one, guess I had a lot to say.

The dogs are home!

Jude!

First pic is Jude and I at about an hour and a half after birth, and the next two are this morning, after the transfusion and about 48 hours on ice. GNOME WARRIOR!

Chillin'

First, I'll say that Jude is way more relaxed today than at any point before. He's on the same amount of sedative as yesterday, but his legs are relaxed, his toes are together, and his arms are away from his chest. He's doing exactly what they want him to be doing, which is holding all his vital signs steady and relaxing.

For those of you who are interested in the facts as we know them right now, here's what I see as pertinent, keeping in mind that we still don't know for sure what's wrong.

- He was born after being without oxygen for about 6 minutes, due to a placental abruption (separation of the placenta from the uterus) and a nuchal cord (u-cord around the neck)

- He had a 1-minute Apgar score of 1, meaning he had a pulse, and not much else

- He gasped for breath at about 10 minutes after birth, and was breathing on his own within an hour

- He had a very acidic blood Ph due to lactic acid in the blood, which was treated and eventually corrected with sodium bicarbonate

- he had a seizure at some point within the first four hours, making him a candidate for the cooling blanket

- His EKG showed some pulmonary hypertension, and his EEG and cranial ultrasound were normal

- He was very irritable for the first two days on the blanket, but is much more relaxed now

Based on all these things, I'm optimistic. I'm the kind of person that likes to have a story that explains things (watching too much House, I suppose). My hope is that there was never any major brain injury due to lack of oxygen (which is why he was able to breathe on his own so soon), his seizure was caused by the low pH (which is very possible), and the hypertension and irritability was caused by a combination of the irritation of the brain due to the hypoxia and the discomfort of the cooling process.

I don't know that this is what happened, but that's the story I'm hoping for and it makes sense to me.

Tomorrow is a huge day. He gets warmed up at 10am, it will take six hours, and if he's responding well, we will GET TO FINALLY HOLD HIM. Cross your fingers for us.

Finally, we get the dogs back tomorrow too. It's funny when things go so wrong how much you look forward to your familiar comforts, and petting Lucy and getting licked by Clara will only help our coping, I'm sure.

Coming soon, PICS, I promise.