Another day, another step… Today was a very good day for Rhys and Leilani. There weren’t any major moves forward, but I’m beginning to learn a good day in the NICU means no major setbacks. Rhys’ stats stayed stable for most of the day, except when mommy and daddy turned off the bili-light so we could get a better look at his face. Mamma had not really seen his face in person. Only through pictures.

Since we turned off the bili-light we could remove his blindfold. Well, turns out he had to take a pee, and the warmth of the bili-light was gone. These things combined made for a pretty messed up little keike. His saturation started dropping real fast, and my heart started racing. His temperature dropped like a rock too… The nurse stepped in and quickly set things right. I swear, I’m more worried about me making it through this than them! I feel like I’m 74 years old now… This is the THIRD time I’ve been there to witness something like that. Tho, thankfully this one was not near as severe.

Leilani is doing well. They are trying to get her to start feeding, but she is not taking to it quite yet. Nurses say this is pretty normal, and should get better soon. The bubbles on her chest-tube seem slower. But, I’m told this isn’t a tell for anything really. So sue me, I’m an optimist! Here’s a pic of her and I.

I know that mamma could have stayed there all night long just holding them, but she needs to come home and get some rest. Besides, I have to wake up early to get Ki to the Airport. Here’s a pic of mamma and Rhys.

Everyone has been so supportive, and so kind to us during this. My work has been most graceous in allowing me the freedom I need to take care of my family. Ki was nice enough to sit for the animals while we were gone. Considering he was supposed to be up here visiting on a vacation, this is quite a sacrifice. Drew and Cyn have been there for us everyday of this adventure and so supportive. They’ve been runners for us, and ferried grocery supplies to us so we could stay at the hospital with the kids among just being an emotional crutch for us to unload on. Thanks guys! We’ve had folks from near and far contacting us. People we don’t spend near as much time with as we should. Not to mention total strangers expressing their kind wishes for the twins to get well. I just can’t believe all the calls we’ve got, and all the flowers, and all the visitors we’ve had so far. It’s truly overwhelming to see how many people care of us and our kids. I’m left speechless. I could go on for days naming everyone who has gone out of their way for us, but this entry would be too long to stand. So, you all know who you are. From the deepest depths of our heart we thank you so very much.

And finally, here’s a picture of mamma and daddy in the morning just before they kicked us out of the hospital. It’s so nice to be back home in our own bed, but I miss the kids. :( I know this isn’t going to get any easier, and I will fight by their sides for as long as it takes to get them home and healthy. They are my world now.



That picture of mamma is actually what it looks like just before you get socked in the stomach by a redhead. I thought I would do the world a service. If you ever see a redhead looking like this, run. Run for your life. Don’t look back, don’t try and save your buddy. Just run. ;) hehehehe

We just found out that Leilani may have her vent removed tomorrow or the next day. She was breathing on her own quite well, so soon it will be time to give it a try without the training wheels. That’s my girl! :)

In other news, Rhys did not take to the central line. There were two attempts made to put it in, and each time his stats dropped out. They will have to try again later.

Just like in the womb, Rhys just wants to be left alone, and Leilani wants to dance a jig! ;)

Ok, let’s take an assessment. As per usual I will start with the things pissing me off, and wrap up with all the good things in my life. I’m not a pessimist! I just save the best for last.

My son and daughter are in ICU, and have more tubes threaded into them than I can count. My wife hobbles around like an 80 year old grandmother. Her surgery was good stuff. Heidi says her breasts feel like “flaming boulders”, and she has to hookup a nazi torture machine to them every two hours for fifteen minutes to extract about a 1/4 shot of milk! Talk about a slap in the face. They found cancer in my mom’s neck where her thyroid was, and she will have to undergo more scans and treatments. This means she will be isolated at home throughout Christmas because she will be radioactive…

Ok, the good stuff? My son and daughter, while critical, are stable. They received their central lines today which is a more permanent IV line for the road ahead. Rhys’ chest tube was removed today. The hole in his lung was completely healed. His oxygen level is hovering around 25% and 30%. That is the oxygen level on his vent, I mean. The idea is to bring this down to 0% to get them breathing room air. Leilani is still around 35% - 60%… This last visit Leilani has finally calmed down a bit. Earlier she was flailing around just mad as all get out. They changed her diaper and she’s doing better now. :) Boy is she going to be a handful. The pressure on Leilani’s vent has been lowered. I think this will help the hole in her lung heal. The staff here at TMC have been exceptional! I can’t say enough good things about these people here. Even the worst of them are better than most of the military docs I had to visit most of my life.

So, why is Christmas cancelled? Well, I don’t mean it to sound that harsh. But, nothing can possibly touch the amount of emotion I have felt in the last few days. A good Christmas for me will be a nice quiet day/night with my kids. All the parties and get togethers are so far away from my mind… I have my daughter and my son, what better Christmas could I have?

Ok, here’s some pics. Today I only have pics of Rhys.

Rhys sleeping with all his tubes… :(

Rhys under the lights…

So, what’s happening today? Rhys was having some bruising on his side which was cause for concern about his platelettes. He’s since had a blood test which has shown there is no cause for concern in that realm. The hole in his lung has healed completely. The chest tube is being left in for a few days just to be safe. He is receiving a blood transfusion for a low blood count, and will be undergoing photo treatment soon. He’s responding well to stimuli and has a great color. He has had another lung treatment to which he responded well. Most importantly, his brain scan has come back showing no bleeds in the brain. Yay!!!

Leilani is in good shape all things considered. She has had more lung treatments to which she is responding well. Doc says she is on her fourth treatment! Fourth!? I thought this was number two! Gonna have to talk to the doc. :) The hole in her lung has not healed yet, but these things take time. She had a heartscan today, and the nurse said she heard the doc talking about a heart murmur. We’re not too happy about that, but we understand this is quite a common thing. Leilani will be having a blood transfusion and will be undergoing the photo treatment as well. Basically, they get meds infused, and then they are put under a special lamp. This is done to help heal a hole in the heart. Some kids have it, some do not. If left untreated, this could cause bleeding in the brain. Lastly, and best of all, Leilani’s brain scan came back negative for bleeds.

They are both doing much better than I had expected initially. I’m very hopeful, and I can’t wait until we can take them home. They are my life, and my inspiration. I can’t imagine a world without them. Thanks to everyone for praying for us, and for lending us your emotional support. It has meant so much to us. Undoubtedly, this is a large part of the reason we are doing so well, and that our kids are doing well. Thank you. It’s truly unbelieveable.

I caught a picture of Leilani with her eyes open. Click here to check it out!

Rhys

Leilani

So, after my bitter entry just previous to this, I thought I should put in something a bit more upbeat since I’ve sufficently cooled down. It’s just that both times Leilani and Rhys crashed I was there. I was talking to Leilani and holding her hand just before it happened to her. On my way out her saturation dropped and they kicked me out. Nothing angers you more than seeing a bunch of strangers swooping in on your daughter — especially if two of them rubbed you the wrong way. I’m sure they are fine at what they do. And I thank the fates they are there to give my children a fighting chance…

At any rate, we just got back form visiting them. It’s amazing how much support you will find in other people. We’ve had many visitors and many callers to wish us well. I’m told there is quite the prayer chain going for the twins. Starting here, and going all the way to Singapore, Philippines, east coast US, and back home again. I can’t tell you what that does for my spirits and for Heidi’s. Even more amazing is how much support and strength you find in your children. Just looking at them and watching them fight gives me so much hope. They have a fighting chance, and nobody — especially them — are giving up! Leilani opened her eyes this last visit! Rhys gave a valiant effort to open his eyes as well. Amazing how such a small thing can bring you to silence.

Leilani

Rhys

Last night Leilani had a collapsed lung. She was without air for a few minutes, and the damage if any has yet to be discovered. They had to put in a chest tube in order to evacuate and reinflate her lungs. As far as can be told today she is fine.

Rhys had lung problems today just a moment ago. He also has a chest tube now. They don’t know if the tube was blocked, or exactly what. He was not responding to manual respiration. Doc says he looks fine now, but was without proper saturation for about 30 minutes. He has a brain-scan scheduled and we will then know what the prognosis is…

I’m sad of course, but also extremely angry. Why is it that crack-whores can pop out babies like crazy. Babies that I eventually have to pay for so they can get more welfare and have more babies in order to afford more crack, because she gets more money for each child. Why is it that there are people out there who are having children who end up beating them and taking them for granted? People out there don’t understand just how precious life is. The lady who brought us our birth certificate paperwork exclaimed, “Really?” when we told her we were married. She says she hears that so rarely… What is wrong with this country and the people here? Why is it that this hospital we are at is one of the best in the state, even the country, and they complain about being understaffed. They run around like chickens with their heads cut off looking for CO2 detectors when my son is in respiratory distress. Then after foraging they exclaim, “See? That’s why I told you to order these!” What the fuck? This country is filled with lazy, incompetent fucks! Have some pride people! Suck it up and do your job, you selfish fucking bastards!

To everyone’s credit here, the staff is quite competent (I’m just angry). I suspect even the person who was supposed to order those C02 detectors is quite competent but quite swamped, or beseiged with a system so unorganized that it is nearly intollerable. But sometimes I look around and am amazed at the progress we have made. It truly is amazing that my kids are given the chance they have being so young. It’s something that makes me wonder what we would be capable of if we had our shit together…