We're Up and Running
With many thanks to our friend Dan who turned this simple baby registry into an easy to use blog (for those of us not so big on technology…) we now have a place to introduce you to and keep you updated on our little guy.
Nathan’s Arrival (the Reader’s Digest version)
Our little guy Nathan has a pretty incredible birth story. Ask us some time if you want all the details – we're not sick of telling it yet. Nathan was due to arrive around April 29th but he had other plans. At 8:30pm on last Friday evening (February 11th) things seemed not quite right. A visit to our nurse midwife at Mount Auburn Hospital determined that my water had broken and set everyone in motion to prepare for our baby’s arrival at just 29 weeks old. The biggest question was how long labor could be slowed or stopped so that baby could have more time to mature. As we left Mt. Auburn by ambulance around 10:30pm and headed for Beth Israel (where they have a level 3 nursery and can care for babies before 32 weeks) everyone thought it would at least 24 hours before we became parents – possibly even a few days. By the time we got to BIDH (it was maybe a 15 minute drive) I was 4 cm dilated. The Resident told us “we’ve kept women pregnant for a few days at 4 cm, but not many…” but still, no one was panicking. I had only mild abdominal pain and no real sense of contractions, so it didn’t feel like things were happening quickly. My parents ignored our instructions to stay home (we really thought we’d have time to get settled and used to the idea of having a baby) and arrived at the hospital around 12:00am. My mom joined us in the delivery room and a few minute later the real work of labor began. 30 minutes and a half dozen contractions later we met our little boy. At 12:32am, Saturday February 12th, Nathan came out talking and waving to everyone and we got to hold him before he was taken to the Neonatal Intensive Care Unit. Every system and organ in his body still needs to mature, and he’s having to quickly learn skills that I should still be doing for him, but in spite of it all, Nathan is a healthy little boy. And super cute!
The Great Escape
We knew Nathan was a kicker – he spent a month kicking me in the ribs before being born. Now that he’s out in the world we’re realizing how strong his legs really are. And how much he enjoys stretching them out. Last night Nathan escaped from his cocoon and got himself completely off the mattress of his isolette. And then he started crying and complaining to the nurses because he didn’t like the hard plastic he found himself on at the head of the bed. We couldn’t imagine how he did it until we saw him do it again this afternoon. Turns out that when he’s on his stomach and not sure he likes it (or feeling particularly energetic - we're not sure which), Nathan stretches out his arms and legs – essentially doing pushups – and propels himself forward. So know we know – our son is already on the move.
7 Hrs of Freedom
Nathan’s been doing such a great job breathing on his own with a little bit of support from “continuous positive airway pressure” that today he got to try breathing completely unsupported. The prongs came out of his nose first thing this morning and Nathan was thrilled. (He’s been removing the prongs on his own pretty regularly, much to the dismay of the nurses.) We were thrilled too because it also gave us the opportunity to take some super cute pictures. By late afternoon re-inflating his lungs after every breath was begining to wear him out, so Nathan went back on the CPAP. He hasn’t tried to pull it out again, so maybe his 7 hours of freedom gave him something to look forward to and made him better appreciate those prongs.
Kangaroo!
Nathan's Umbilical Catheter (belly button feeding tubes to us lay folk) came out this morning so for the first time I got to hold him skin to skin. We both decided it was a good way to nap.
Finally Daddy’s Turn
Dad finally got a turn holding Nathan. Up until now Tim has been so conscientious of how to support milk production that every day I’ve been holding our baby, but if you’ve seen our freezer you know milk production is not a problem, so today Tim held Nathan while he had lunch (1.5 oz breast milk by feeding tube). They even practiced making goofy faces together.
Nathan's First Big Challenge
Up until now Nathan has faced the usual challenges of a preemie - namely, being early. He's had to breathe on his own, learn to digest food, gain weight so he can regulate his own body temperature - all things that Mom would still be doing for him if he were in utero. Amazingly, he's been developing these skills quite well. The doctors have also been monitoring his heart to make sure the blood vessel that is open in all babies when they are born closes properly.
On Tuesday afternoon the sound of his heart murmur changed so they ordered a heart echo. The echo done Wednesday afternoon showed that the vessel had not yet closed and that Nathan has a small blood clot in the right atrium of his heart. This was likely caused by his belly button catheter (which provided extra nutrition and fluids while he was learning to digest breast milk) irritating the wall of the atrium. Nathan's temperature was also high yesterday (Wednesday) and today the doctors are calling it a fever. His white blood cell count looks good and there are no signs of infection, but they have him on an antibiotic as they continue to do lab work to make sure he is infection free.
We have a meeting with the doctors this afternoon, but at the moment our understanding is that they see the clot as something to address so that it does not become a problem, rather than something that is already a problem. Because Nathan has shown no signs of distress - he continues to breath on his own, eat well and complain when the nurses bother him - they believe the blood vessel in the heart can continue to be monitored with the hope that it will still close on its own. And they are checking for infection.
Needless to say, especially after Nathan was doing so well, this is very scary.
Transfer to Children’s Hospital
Things have been very up and down with us all lately and and finding the time to send updates has been really hard. The latest news is that Nathan has been moved to Children's Hospital to get extra care. On Wednesday of last week his heart echo showed a small clot in his right atrium (his heart). It wasn't causing him much of a problem at the time, but they wanted to treat it, just the same, so that it wouldn't later be a problem. The next day he was diagnosed with a staph infection.
The plan for treating the clot was to give Nathan medication, a blood thinner, to keep the clot from growing, so that the body could dissolve the clot on its own. They started this treatment on Wednesday night, but when they looked at the clot on Friday, they found it had actually gotten bigger. They called Katie and me in for an emergency meeting with the Cardiologist from Children's hospital, who explained to us that surgery now needed to be considered in our list of potential best options. It was at this point that they moved Nathan from Beth Israel, to Children's Hospital, to keep a close eye on the clot and make sure that it would respond to more aggressive medication and not break off and travel to some other part of the body where it could do some real damage.
So here's where things stand today. The surgeons have told us that they don't want to do surgery unless Nathan gives them some indication that they need to. The first indication is if his blood pressure changes. This would indicate that the clot has grown to a size where it is impeding blood flow. Thankfully, there have been no blood pressure changes. The other indication they're looking for is if he continues to test positive for Staph past Monday. If so, this will confirm their suspicions that the clot itself is infected, and microscopic pieces have been breaking off and spreading the infection to the rest of the body. Infection always complicates surgery, so this would be the worst scenario. The only other thing that could lead to surgery is if they see something on the heart echo that tells them they need to operate. At the time of this writing, we have just heard that they have performed another heart echo and we are awaiting the results of that. What we want to see is that the clot has stopped growing.
The only good news is that this seems to be just a major bump in the road. From what the doctors have told us, once all of these things are taken care of, there should be no long term damage. Of course, the risk of that goes up if he has to go into surgery. So now it's just a waiting game. Yesterday one of the doctors described Nathan as critically ill. Katie and I are scared and exhausted, but we have faith that God will see all three of us through this. We appreciate your love, support, and prayers.