The Golden Compass

A quick update

Lyra is doing well, getting fed every three hours through a tube that goes through her nose and down to her stomach. Maren is working with occupational therepy people to teach Lyra how to eat normally, but it's slow going. From what I've been able to discover, this is fairly typical for HLHS babies. With the stress of the surgery and the time spent on a ventilator, Lyra doesn't have the strength yet to breast feed. She also has to be taught to do it because everything that's been done has altered her instincts. We've been told that we'll have to get used to the idea of putting in this feeding tube on our own, which is fine. If that's what we have to do, that's just what we have to do. The goal is to keep her growing until the second stage of the surgery.

Still, she's just like other babies in some ways, sleeps a lot, but of course is wide awake from 4-6 in the morning.

A day of stress

Yesterday didn't start out too well. Okay, it initially started out fine, but soon became more stressful than previous days.

Maren and I left early to do some shopping. We had only 2 items on the list, a crib and a car seat. We went to USA Baby for both, based on recommendations by Maren's co-workers. The crib selection was more than we were prepared for and because of their inventory and selection, it took longer than expected. The car seat became a travel system (also based on some recommendations), which included a stroller. I have to admit, these things are pretty slick and should make life a little easier once we have Lyra home. Although, it'll probably take some time before either of us is comfortable taking her anywhere with us.

Then we headed back to the hospital to find out that Lyra's transfer to the regular pediatric floor (what they call the "transition" area), was delayed because she had a spike in her heart rate (this was the 4th time it's happened since she was delivered). So, while they dealt with that, she stayed in the PICU for a bit longer. During this time, Maren and I did get a chance to talk to one of the attending cardiologists and he explained that the heart rate spike (they called it SVT, but no one defined it), while not normal, isn't uncommon, not only for babies with heart problems, but even for kids with normal hearts. He also told us that it's not an emergency/panic situation, that if it happens when we're at home, we have time to get her to an emergency room if necessary. Lyra has managed to get her heart rate down on her own on two other occasions.

Finally they moved her to the "transition" floor. This, I have to say, was more of an annoyance than it should have been. I won't go into a lot of detail here, just that it was overly chaotic. Some of that was just due to the change in her level of care, which is something that we have to get used to. Lyra doesn't have the one-on-one care that she had in the PICU, but even so, it was just aggrivating to have a monitor going off constantly and no one really looking at it. This was her pulse oximeter. We know it's something important to monitor, but in my opinion, if it's that important, it should be centrally monitored or at least monitored outside of the room, as it is, we end up having to call a nurse when it alarms, which just seems pretty stupid considering how often it alarms.

Anyway, they finally got things somewhat normalized and after a few hours, the room and floor seemed to quiet down and Maren can now hold Lyra whenever she wants to.

More surprises

Lyra continues to surprise us. Today we headed to the hospital thinking it would be a day of rest and for the most part it was, but we also found out that her doctors are about ready to transfer her out of the PICU and to the normal pediatric floor. She'll still be seen by the cardiology docs, but Maren (and maybe myself if two parents are allowed to stay) will likely be staying with Lyra overnight soon, possibly even beginning tomorrow.

Her progress has been exciting, but it's difficult to accept it completely, but I think we're starting to turn the corner on that. The nurse today was filling us in on all the stuff we need to buy for her, so it looks like a big shopping trip will be happening within the next few days. Knowing what was in store for her, we had put the idea of taking her home with us our of our minds until the major events were completed, but with those behind us, it's really starting to hit us that she is going to be coming home.

A big day

At this point the "big day" was yesterday, but who knows, today could be one too. Yesterday Lyra was taken off the ventilator and she did just fine. Her little vocal cords aren't too strong yet, so she sounded like a little kitten, but I'm sure that will change soon.

She was also taken off a lot of her medication while we were around, so she was a bit agitated most of the day. Maren and I took turns getting to hold her and that was pretty fantastic. She had a little episode where her heart rate shot up, but it came down on its own before they had a chance to give her any medication. Before we left for the day, she was given some plain old Tylenol and that seemed to make her more comfortable and she finally fell asleep.

Today will likely be more of a resting day. It's possible that she'll get some more lines removed because with the medication off, she won't need them. Other than that, not much else is planned.

sitting in a rocking chair

Today was a pretty special day for Maren and I because we got to hold Lyra for the first time. Earlier in the day, I had called the PICU to find out how Lyra's night had gone and what her status was and everything was quiet, they were still weaning her off some medications and today was looking like a day of rest, so we were pleasantly surprised when Lyra's nurse told us that we could hold her.

She's just a resiliant little girl. Other surprises in store for us today was that her chest tubes have been removed, leaving just a couple of sensor wires to be taken out, probably tomorrow. Also, they had taken her off a couple of her medications, one of which was a pain medication that made her drowsy, so at various times today she had her eyes open and was looking around at things, looking somewhat concerned and not entirely awake.

Plans for tomorrow include the potential for her to be taken off the ventillator and allowing her to breathe on her own. I'm not sure what all will happen after that, but it's a step in the right direction.

Stage 1 complete

I'm calling it complete anyway... it might not be 100% complete from a medical point of view, but the surgery is done and today they closed the incision, so in my mind, Lyra has gotten completely through the first stage of her reconstruction surgery.

Today was pretty quiet. She was of course, given general anesthesia before they closed her incision, so she slept almost the entire day. There were a couple of tense moments when her heart rate shot up over 260 later in the day, but they managed to bring it back down quickly with medication.

In my mind, if these are the little problems she's going to present, at least they're problems that have a known solution. Still, it was a hard day for Maren. Yesterday, Lyra was very interactive, being mostly awake throughout the day, opening her eyes and grasping our hands, but today, with the sedation, she was pretty listless and even though everyone keeps telling us how well she's doing, it's hard not to feel continually concerned and anxious.

Next up for Lyra will be to have her ventillator tube removed. She was being weaned off the ventillator over the course of the day, in preparation for removing it, so hopefully tomorrow or Monday, she'll be allowed to breathe on her own and they may also be able to start feeding her. Maren is determined to breast feed, so she's been a real trooper getting up every 3 to 4 hours to pump.

An update...

Lyra is holding up her end of the bargain in this venture. She's doing as well as could be expected, her swelling is pretty minimal and they're starting to wean her off some of the medication used to manage her blood pressure. If all goes well over the next few days they should be able to close her incision and possibly remove some of her chest tubes.

The last couple of days have been pretty amazing. The nurses have gotten her all cleaned up, so other than the tubes, she looks a lot better. She's been a lot more interactive, not quite awake, but not fully sedated as she was immediately after surgery. Maren and I have gotten to hold her little hands and have gotten some squeezes back in return. She's tried a bunch of times to open her eyes, but she's not quite there yet.

She's a tough little girl, but sensitive. A lot of times when they try to change things like reduce her medications or move her too much, she responds by dropping her blood pressure, so everything has to be done rather quickly to avoid a prolonged decrease. We're not in any hurry though. We're on her schedule.

And a picture...

Thanks to our doulas, Sheryl and Michelle, for taking pictures!

Yes, lucky for us, an odd quirk of scheduling resulted in us having both there to help us out :)

One hurdle cleared

Lyra's surgery went as well as could be expected. The surgeons did not encounter any complications during the procedure and we were told Lyra did very well. She's back in the PICU and stable.

It's kind of a shock to see her now. For such a small little thing, she's got a large number of tubes and sensors attached to her. The IVs are bad enough, especially when she's got them in 3 out of 4 appendages, but the new items are her 3 chest tubes that are necessary to drain out the fluid around her incision.

Maren and I are doing okay though. We had a chance to read a bit to her tonight and the nurse allowed us to clean her a little. We finally went home afterwards and even that is difficult, just doesn't seem right to leave your newborn child alone at the hospital, but she's getting very good care and since she's sedated the entire time, there's not much one can do except just be there with her. We're also very tired. Maren especially needed to sleep in our own bed for a while.

The next milestone for Lyra will be sometime in a few days, maybe as long as a week, when the doctors close her incision. It was left open and covered because with the swelling, it's too hard on her newly reconstructed heart to have the chest closed back up. They wait until the swelling has gone down and Lyra has had a chance to begin expelling the additional fluids given to her during the surgery.

hello world

Lyra Judith was born at 2:21 am on Sunday morning (2/15/04), missing Valentine's day by just a couple of hours.

She's a sick little girl though and it's it's a very surreal good/bad feeling visiting her in the pediatric ICU. It's wonderful to see her and touch her, but you're also jumpy all the time at all the various alarms that are going off and then sometimes you'll get a little too much detail about what they've had to do to keep her stabilized, making the reality of her condition really hit home. But for the most part we've had really good visits with her. She's got a lot of things hooked up to her right now. They've got her intubated and sedated so that they can carefully regulate her breathing. When she starts to wake up, she breathes too fast on her own, which causes her lungs to deprive the rest of her body of blood. But she's also got a lot of stuffed animals in her bed and they've put a little bow in her hair (she's got a fair amount of dark hair), and she looks beautiful in spite of all her tubes and sensors.

We did find out that the surgery will be first on the schedule tomorrow morning (2/17), so that was good (before we had heard maybe Tuesday, but more likely Wednesday(2/18)). The surgery takes about 4 hours and they're going to keep us updated throughout the process.