Just got back from the hospital. Today is a far better day than yesterday. Leilani, while not really “stable” is not being bagged everytime they change her position now. She still has air in her chest which they are trying to evacuate so she can expand her lungs. Her blood pressure is much better, thanks to the dopamine which she will remain on for awhile. She’s pretty responsive and alert, but she is still quite swelled up from her infection. It’s confirmed, but the specifics of the bacteria are not yet back. Once that information is known they can use more targeted antibiotics on her, instead of this broadbased antibiotics she is on now.

Rhys is doing well today. My baby boy is fighting so well. He’s still got an infection, tho they still haven’t been able to grow anything in the culture. His white cells are elevated which indicates an infection. He’s receiving antibiotics right now to help him fight, and they are still trying to grow a culture to see if they can find out what kind of infection it is. His bloodgas is awesome, and heartrate and blood pressure are wonderful. He’s snug as a bug in his little isolette.

First a picture of Leilani, and then of Rhys. Check out Rhys’ picture and see if you can notice anything different!

Leilani

Rhys

That’s right! Baby boy got his ventilator taken out!!! They were changing his tube today because it was sounding scratchy. So, they extubated him and were about to intubate with the new tube and noticed he was breathing on his own! He’s kept it up since 10am this morning!!! They say he very well may get intubated again, but not to look at it as a setback. The fact that he is doing this much on his own is a GREAT sign!

Everyone out there who is praying for my kids, thank you so much. I’m not a religious guy, but these two keikes have really brought about what spirituality I had in me. Keep praying with me, and know that we are eternally greatful for everyone who has lent us support. I can’t say enough good things.

Well, I skipped a day in updates, but it was for a much needed physical and mental break. Heidi slept 12 hours! I slept about 11 hours. We got up today around 3pm. Now, I’m tired and ready to go to bed again!!! I feel like if I don’t do something creative soon I’m going to explode, but of course, I have no time for that kind of thing. Heidi is super drained, and it appears part of her incision may be separating… No! Not my wife! She wouldn’t have over done it… :) lol

The twins are having a good day today. The past couple of days were a rough ride, but things seem to have settled out. Rhys was intubated again, which was expected and a normal course to run for babies his age. But, no matter how much you are prepared for it to happen, when you see your son limp and crowded by doctors and nurses — one of them with a bag over his mouth trying to get air into his lungs — you tend to go white… Now, Heidi and I have both seen each of them in crisis. I bet we aged 5 years in the past week and a half….

Both of the twins still have infections. Leilani has a strep infection and Rhys has a staph infection. They are both on antibiotics which target those specific bacteria, and they are both showing a bit of improvement. Most of all, they are more stable than before. They are tolerating their cares just fine and not crashing when someone moves them. Leilani is still on Dopamine to help her blood pressure, but the dose has been reduced, and had to have another blood transfusion today.

Both of them are being fed off and on. They are still having some troubles with the feedings – tolerating some, and not others. The docs keep taking them off feeding, and then putting them back on. This is normal for kids their age.

Not much more to tell here. Our friends are out partying and rather than join in a bring the whole mood down we’re going to stay home (maybe head back to the hospital) and have a quiet night. Heidi will probably watch TV, and I will likely do some coding. We both need some relax time…

Happy New Year! Take care out there, and be safe.

Rhys

Leilani

Well, we’ve had a rough couple of days. The kids are still not out of the woods yet. Leilani has been having many problems the worst of which is an infection. The infection is confirmed, but we don’t yet know what it is. We do know it is a blood infection. Because of this she has been having other problems to deal with. Her blood pressure is very low, and her oxygen has been desaturating everytime she gets her cares done. They’ve had to bag her many time today after moving her to change a diaper or what have you. She’s a fighter and she will get through this. I have faith. She needs all the prayers and good wishes she can get, though.

Her brother still shows signs of an infection, however, they have yet to be able to grow anything in the culture… He’s been having problems with blocked tubes for his airway, desaturating his oxygen levels, and he’s still quite swelled up. While we were there, a funny thing happened. Well, not funny really — more interesting… Leilani had to be bagged because she was desating from being moved and fussed with. Rhys’ stats dropped at the same time, and the nurse could not find anything wrong with Rhys. As soon as sister was fine, Rhys was too… I know I know… Still, it makes you think. I can’t wait until they can be together. Right now they are rooms away…

To make matters much better, shift change at 7pm found Leilani with a resident… Ugh… A resident. My heart sank. I thought, why would they put a resident with such a sick baby!? What if she makes a mistake? What if she’s not ready? Why can’t she be with a healthier baby? Then I look around and quickly came to realize that all the babies in the NICU are very sick… It’s a NICU! But, I still feel selfish. Why can’t we have just the one nurse with our kids that we like? Idealistic… I know. Unrealistic… Turns out the resident seems quite knowledgeable, and they would not have let her in there if she weren’t. It is so hard to trust someone with the health of your child. We have to, I realize, but it is still very difficult. I came to learn later the resident is Filippino, so she can’t be all that bad, right? ;)

Rhys and Leilani are both fighters, and I thank god for that. This is their best asset aside from the nurses caring for them. They will both make it, and we’re going to live happily ever after.

I can’t begin to share the feeling of helplessness you get when your child desats, or gets a blocked airway, or their blood pressure drops out… You feel as if your insides have been instantly hollowed out — infintely empty. I think that best decribes how I am feeling… Infinitely empty…

Mom and Leilani

Rhys

Another long day. It is amazing to me how time flies when I’m inside the NICU with the twins. They way all your troubles seem to melt away when you see them. As I walk in the hospital I am usually thinking about how to get my pay straightened out at work, when I will have time to complete the program I am working on, when I will be able to wire the house for ethernet, etc. As soon as I enter the NICU, I forget it all. Time stops for me, and all that matters are the twins. Then when you finally feel that they have had their fill (because you never get enough of them), you realize hours have gone by. I’d say the worst part about the NICU, is noticing empty baby warmers. That is to say, baby warmers that once had a baby in them. There’s those babies that are no longer there, than you just know didn’t make it, and it breaks your heart. You have to hope and pray that you are wrong and by some miracle they made it home just fine. There are also some, that you are sure made it out just fine. I have to say, I don’t know how those nurses and doctors can work there. I’m thankful they do, but I couldn’t do it. Something about innocent life that makes things so much more difficult. Mistakes are unforgiveable, I would think. How would you live with yourself? My hats off to those men and women. truly extraordinary people.

Today, Rhys is having a not so good day. The docs are pretty sure he has an infection of sorts, and have sent a blood culture out to find out what exactly it is. He received a blood transfusion today, and I’m sure that helped him feel a lot better. They’ve got him on antibiotics right now, and we should start seeing some improvement in a day or two. He’s swelling a bit because of all the things going on (he’s just not feeling well in general). It’s really concerning…

Leilani is getting a long pretty good. She still has a hole in her lung, but we’re getting closer and closer to it healing. They are trying to put the vents down as low as they can for her to help the healing process. Her blood counts are fine, and she seems to be faring quite well.

On the plus side the bili-lights are off of both kids today, so that gave them a break from the blindfolds. We got to see their beautiful eyes again! It still stuns me to the core when I see her eyes.

Leilani

Rhys

Ahh, Christmas 2003. This is not what I expected this Christmas to be like. Heidi’s presents weren’t even wrapped because I had expected to have more time. Nonetheless, we had a nice Christmas morning, just us and the animals. Kahlua received bones, and an insane quacky thing. I know we are going to rue the day we gave this to her. The cats got fake mice, and catnip treats (which Kahlua ate behind our backs). Of course they played with the big box we put all of it in, and the ribbons and wrapping paper more than the toys… Such are the joys of cats.

Heidi received slippers, pajamas and other comfort related stuff. I, of course, received my token summer sausage and geek items like hypercafinated drinks, linux badges, gnu stickers, and shirts with computer geek humor that is lost on the face of the layman. All in all pretty standard.

After gifts, we went to see our babies. The twins are fine. They had a great day today, and I am so thankful for that. I am also very thankful for the nurses that are sacrificing their Christmas to care for my children. How truly selfless. Today was a day which follows the rule, “No news is good news.” We need as many of these days that we can get. They are both back on the bili-lights, which is normal. Rhys graduated to an isolette. So, now he has his own private room. :) Although I feel like he cannot hear me talk to him anymore. :(

As you can see, it’s rather late, so I’m gonna hit the sack. Again, thanks to everyone who has given us so much support! I can’t say enough good things about you. I hope your Christmas was blessed.

Here’s some pics.

Leilani

Rhys

Today was a good day for the twins. Leilani, however, did have a bad morning. Her blood count was low, but a transfusion fixed that all up. She did fine for the rest of the day. She even went to the bathroom on her own! ;) After talking with some of the docs, it was clarified that the “hole” in her heart is actualy a vessel that all babies have. It is something that usually closes up on it’s own. In premies it sometimes needs to be aided. Leilani is still having issues with this. The hole in her lung has not healed, but the bubbling seems even slower today.

Rhys had a good day all around. Tolerating his cares just fine, and was fed today. So hopefully we will start seeing some weight gain. So far it has been only weight loss, which while normal is still not so fun to hear about. The best part of all was when Rhys opened his eyes! I don’t think I can explain what it is like to look into your son or daughter’s eyes. Nothing like it. Nothing compares.

In other news, I made some sinagang to cheer me up! Yay! Nothing better than sinagang! Also, super dog decided to run full speed into the house after being outside. She did this before I had a chance to open the screen door… Stoopid dog…