Lucas Camilo

Today Lucas is one week old.  We celebrated by spending almost the whole day with him.

We met with his doctors in the morning, and they recommended that we transfer him to Children’s Hospital.  Little Lucas has nearly exhausted the tests they can do at WHC, but fortunately the Children’s hospital is right next door, and they have more equipment and doctors that specialize in his body size.

It was a hard day for us, although Lucas seemed to take the news well.  It was sad to leave the great nurses and doctors at WHC.  As two parents-to-be who thought we’d avoid hospitals as much as possible with our kids, we’ve come to really respect and appreciate the amazing caring work that the staff of the NICU (Neonatal Intensive Care Unit) does every day.  Today, as Lucas was packed snugly into his incubator on wheels for his transfer, some of the nurses who have spent the most time with Lucas gathered around to wish him well and tell him how they’ll miss him.

Lucas’s two favorite nurses at the Washington Hospital Center (Amy and Erica) say goodbye

Yesterday afternoon Krista got to hold Lucas Camilo for the first time since moments after he was born.  He seemed so calm and comfortable during the 20 minutes that he laid on her chest.  In the picture below he had his eyes part way open and we’re pretty sure he was wondering if the guy staring at him was the same one who’d been signing hippie children’s songs to him through Krista’s tummy over the past 7 months…

Yesterday was a pretty good day for Lucas, so good that he got to come out of the incubator for a while and lie on Krista’s chest (more about that later.)  We thought we’d try to give an overview of some of the things Lucas is dealing with right now, keeping in mind that the doctors still don’t have a big-picture diagnosis.

On the positive side, his Biliruben levels are down meaning the jaundice is subsidizing, which in turn means fewer intense blue lights around him.  Lucas emerged into the world rather bruised up so they expected the jaundice to come, and it got pretty bad at one point, but the treatment seems to be working now.  Lucas had a pretty nasty shiner in his left eye when he was born, but that’s also gotten better.

In addition to the bruises, Lucas had a lot of little red dots on his skin which doctors attributed to a problem with blood clotting.  During the first few days of his life he had a couple blood transfusions because of suspected deficiencies of certain proteins that was causing some internal bleeding to not clot.  That problem also seems to be getting better, though even the hematologist is a little baffled by why he had those issues in the first place.  At any rate, his blood tests have improved, the red dots have all but gone away, and the bruised are going down, all good signs.

He also has respiratory issues and is still only breathing with assistance from a ventilator.  This is common with premature babies, and over the past few days he’s started to breathe more over the ventilator, which is good to see.  But having a big tube down his throat means there are lots of secretions that he can’t deal with properly, which clogs up his throat and lungs even more.  He’s getting some respiratory therapy which seems to be clearing things up and hopefully he’ll be breathing on his own soon enough.

Which brings us to little Lucas’s brain.  Right now, there are various abnormal brain functions that the doctors have observed which may have been caused by what they call “brain thrombosis”, or a clot in his brain in utero.  Some premature babies have bleeding in their brains and/or abnormal brain activity which they can heal from.   So the doctors seem to be moving away from the possible neuro-musculor disorder which we reported on a few days ago and towards a diagnosis that involves the central nervous system.  This of course is an equally scary scenario, though even if there is damage there are possibilities of getting better and having normal or near normal brain functions in the future.

At this point we  just don’t know.  We will speak with the neurologist in the coming days and Lucas Camilo will likely be transferred to the Children’s Hospital next door where they can provide even more special care.

We do know that is Lucas is still very sick.  But the little signs of improvement – more body movement, better skin tone, eyes opening more often, heart rate becoming more steady – give us hope every day that he will get better.

We’re spending as much time as we can hanging out with Lucas – holding his hand, rubbing his back, and telling him about the world beyond the hospital walls.  Yesterday Burke’s parents and sister talked with him about the beautiful northwest, about his cousins in Seattle, and about the shell-covered beaches of the Puget Sound. Lucas’s aunt Ashley made him a bright banner with his name, butterflies, and flowers to hang from his incubator, and his grandmother (nona) MaryJo brought him a tiny cow and dog to keep him company.

We got to sit with him in the quiet NICU late last night.  We told him about the bright sun behind the dark storm clouds that passed over DC yesterday afternoon, about all the love people are sending him in the form of lentil soup, curries, enchiladas, and vegan mac and cheese.  Krista promised to go low on the spice so that when he’s ready to drink the breast milk she’s pumping it won’t be too spicy (although Burke is working on convincing Lucas that a little hot sauce is good for babies.)

This morning Lucas got to flip over on his stomach for a bit, to get more skin exposure to the tanning lights (for jaundice) and to see the world from a new perspective.  His eyes were open, so he got to look at us as we told him how happy we are he is with us in this world.

It’s day 5 for little Lucas Camilo and its been a tough ride so far.  We haven’t had a chance to respond to a lot of friends and family because of the emotional rollercoaster we’ve been on since Lucas came into the world on Monday morning.  We are lucky to be now living on Irving street, the same street the Washington Hospital Center is on, so we’re a short drive away and have been hanging out a lot with Lucas since Krista was discharged from the hospital on Wednesday.  Burke’s family flew in from Seattle on Thursday and they’ve been helping us out a lot too.

Lucas is still very sick and hasn’t been getting better as fast as we’d all hoped.  The doctor’s still don’t know exactly what’s wrong but the original diagnosis of infection causing the various problems he’s experiencing proved to be wrong.  Over the past few days there’s been a flood of specialists from both the WHC and the Children’s hospital next door visiting Lucas to do tests and observe him: from neurologists to geneticists to cardiologists, and even a hemotologist.  There are lots of little things that just aren’t working right and yet the sum total is something that doctors say they’ve never seen before in a baby.  But they’re working overtime to figure it out and we’re greatful for the thoughtful neonatologists who speak with us each day, as well as the amazing nurses taking care of Lucas around the clock.

Today the doctors seem to be moving towards a diagnosis.  Though they still can’t be sure, one possibility is that Lucas is suffering from some sort of neuro-musculor disorder, which is effecting his ability to suck and swallow, and making his body movements very limited.  It’s hard to stomach such a thing right now, but among the possibilities that we’d been told about this is far from the most challenging.  If it is neuro-muscular there’s a variety of  disorders that exist, and we probably won’t know until next week what the diagnosis is since he needs to stabilize more before they can do certain tests.

The beautiful thing is being with Lucas and knowing that he can feel and sense our presence despite all his struggles.  Today his heartbeat started racing after the doctor was checking him out and the nurses got worried, but after Krista put her hand on his back the heart rate quickly slowed down.   The soothing mother’s touch… Whatever happens with Lucas we feel so lucky to be able to interact and share with him, and we’re staying strong, hoping for the best, and feeling all the love and support of our friends and family.

Keep thinking of Lucas and pulling for him.  We’ll keep you posted as things move forward.

-krista and burke

Monday morning at around 6:30 am, Lucas Camilo was born into the world at 4 pounds 4 ounces. There was a beautiful sunrise outside the hospital window in Washington DC as he emerged after a quick labor. He’s been wanting to come out early and he finally got his wish…

Lucas is currently resting in the neonatal intensive care unit and he’ll probably be there for a while. The good news is that he likely won’t need surgery on his esophagus as the blockage that doctors had suspected isn’t actually there. However, the little guy is struggling a lot right now with a pretty serious infection that’s affecting his whole body. The doctors believe that’s why Krista went into labor early Monday morning.

We’re staying at the Washington Hospital Center right down the hall from him, and it’s great to be able to see him, hold his hands, and interact with him whenever we want. There’s been some good doctors on hand to explain things, but we probably won’t know how fast he’ll be able to recover until more monitoring and test results are in. It’s both an exciting and scary time for us right now and we hope that you can keep all three of us in your thoughts during the coming days.

Love, krista and burke

Krista went into early labor on July 28, the day we flew into Seattle for a visit with family.  We sent out a number of emails during the 2 1/2 weeks we were there and decided to post those here since they form part of the story of Lucas’s early life.

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JULY 29, 2009

Hello friends,

We wanted to send out a brief update to let you know about some developments with Krista’s pregnancy, as we hunker down in the 100 degree heat of Seattle.

We safely made it to town yesterday but shortly after arriving decided to go to the hospital because Krista was having some pretty bad pains.  As it turns out, she was having contractions, which is way too early for her to be going into labor.  So the doctors here at Swedish Hospital put her on some medication that slowed the contractions, and they ended up draining a bunch of excess amniotic fluid that was likely causing the early contractions.  After that, Krista felt a huge relief of the pressure she’d been feeling and you’ll be happy to know that she’s now resting comfortably in the air conditioned hospital room, and though we’re a little bored, our spirits are solid.

Unfortunately, the doctors have recommended that Krista stay in the hospital for a least a couple more days while they wait for more test results to come back and make sure the contractions don’t start up again.  The various tests that have come back so far show that the baby is healthy.  But it’s a little discouraging to be spending a so much time in a hospital when we were all set to have a natural home birth back in Washington DC, without drugs and other invasive tests.  Most of the doctor’s are nice and answering our questions, and we’ve been in constant contact with our midwife in DC.  It’s also nice to have Burke’s family nearby and we look forward to seeing Krista’s family soon.  Sadly we had to cancel the party scheduled for this Friday in Portland since they won’t let us out of the hospital yet (though Krista has considered tying sheets together and escaping out the window :)

Among the things that we’ve learned is that the baby is probably 2 weeks to a month further along then we had thought, which makes the likely due date late September rather than late October.  We’ve managed to avoid figuring out the sex, and from the pictures we saw on the ultrasound it looks like a feisty little thing… we just hope it holds off a few more months to come out!
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AUGUST 1, 2009

we’re writing to update you on the crazy situation we found ourselves in upon arriving to Seattle last tuesday afternoon.  First and foremost we want to thank everyone for your wonderful emails, calls of support, and visits to the hospital.  It’s felt great to receive such love during a rather scary moment for us and our baby.

We’ve been in the hospital since Krista started having early contractions (on the airplane!) and was eventually admitted and put on some drugs that helped slow down the contractions.  Her amniotic fluid was very high, but once it was drained she felt a big relief and the contractions slowed, and then all but stopped.  Meanwhile, the fluid has remained stable, and all the baby’s vital signs are excellent.  The other piece of good news we got the other day is that the chromosome tests came back normal which means the baby does not have any genetic defects.

So its quite possible that the baby will come out and they’ll find that nothing at all is wrong.  But some of the signs – such as the large excess of amniotic fluid and the small stomach showing on the ultrasounds – lead the doctors to surmise that there’s a blockage in the esophagus that’s preventing the baby from ingesting fluid.  This condition, called esophageal atrasia with  tracheoesophogeal fistula (how’s that for a name!) is a fairly common birth defect that can be fixed through surgery in the first few days of the baby’s life.   So we’ve been talking to the pediatric surgeon about what the procedure looks like, and are heartened by the fact that it has a near 99% success rate… especially if the baby reaches full term.

So that’s the big challenge at this point: to keep the contractions down and prevent early labor.  This probably means that Krista will be on bed rest or partial bed rest for the remaining 2 months of her pregnancy.  That kinda sucks, we admit, but under the circumstances its not so bad.  The other downside, of course, is that its up in the air whether we’re going to be able to make in back to Washington DC anytime soon.   Luckily we’re not scheduled to fly back until August 13 so we’ve got between now and then to keep monitoring Krista’s condition and make a call on whether to return.  Both Swedish hospital (where we are now) and Children’s hospital in DC have some of the best pediatric surgeons around so we’ll be in good hands either way.  And we’ve got lots of family and friends in Seattle, too, so it would be a good place to have the baby.

that’s the update.  Again, its been amazing to get so many thoughtful emails and calls from friends and family, and we can tell you that are spirits are high and that we’re excited to meet the baby… come september! :)

much love, krista and burke

PS: we just received the news that krista gets to leave the hospital!

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AUGUST 15, 2009

Well friends, we made it safely back to Washington DC… and we still haven’t had the baby!  Though s/he is certainly anxious to see the world.

Earlier this week we were back in the hospital with more contractions and it was looking like we might just have to wait it out in Seattle until the baby arrived… which would have been great on one hand since we had so much good support and love from family and friends in the Northwest over the past few weeks.  But ultimately we wanted to get back to our home in DC, ’cause we just can’t stay away from 90 degree humidity.  Oh, and we’re moving into a new house tomorrow :)   So with doctors approval we hopped a plane this morning and made it safe and sound.  And though we’ve spent all afternoon packing, its nice to be back.

The baby remains healthy, having grown a lot over the past 3 weeks, and its kicking more and more everyday.  Though a home birth might be out of the question at this point, we’re excited to be back working with midwives instead of dealing with hospitals (though a lot of the doctors ended up being very helpful.)  We’re exploring the possibility of a co-managed birth with a midwife and doctor in a hospital, and we’ll see how things progress in the coming weeks.  One thing that’s clear is that the baby is a rebellious little one; not only is s/he trying to see the light of day long before 9 months, but its not allowing us pin down the estimated due date.  In fact, the latest ultrasounds have us back to thinking that the birth should be some time in October, which means that Krista still has a lot of bed rest ahead of her.

So send us fun stuff to keep her busy at our new house!  Or give a call now that we’re settled back in.
thanks again for all the support and positive thoughts.

(note: Baby Lucas arrived about 36 hours after we sent this last email)