Thursday, May 27, 2010
Tuesday, May 18, 2010
I'm doing my best not to get too excited about coming home as soon as I'm hoping but we can at least see the light at the end of the tunnel. We came in Tuesday to find out both girls had been turned down to a low enough amount of Oxygen that they could come home on that level if the doctors decided to send them home on O2. When we walked in the alarms were going off and didn't quit going off for about 20 minutes. Normally alarms are a bad thing, but these alarms are set to go off when the girls aren't getting enough oxygen pumped through their body (which is bad) and when they are getting all the oxygen they need which is a good thing. Both girls were at 100% oxygen saturation. Basically, they were getting next to no extra flow of oxygen and doing great with it.
They still have several tests to pass and other hoops to jump through, but if they continue to do very well for 5-6 days with no "spells" where their oxygen saturation drops out, then they will be ready to come home. Thankfully, the doctor said today that she would like to finish getting them off O2 before sending us home if possible. Apparently, she feels like 2 oxygen tanks to carry around with 2 little girls in two car seats would just be a little 2 much for us to handle. Here is what to pray for now:
- Both girls will get MRI's on Friday, which makes us a little nervous just for the whole process anyway. Pray that they will be sound asleep so the procedure goes smoothly and that the MRI's show no new dead spots on either of the girl's brains
- Sophie's eyes to heal so she won't have to have laser surgery (not a huge deal but we'd rather slip out without surgery if we can) Their eye exams should be next Tuesday. As of the last one, Mattie's eyes had started to improve and she should be pretty well out of the water. Sophie's had gotten just a little worse.
- For both of the girls to come off oxygen before they come home. (that's more of a want for us than a need so pray for that one last:)
- Amber talked to Stacey a few nights ago and Crimson is doing great. He is over 4 lbs now so they got to raise the lid on his isolette. That was a huge deal for us and I know it is for them too. He also got to quit wearing a c-pap breathing machine and is on vapotherm like the girls had for so long. That is also a big step. And he gets to wear clothes now...which just makes parent feel a lot better:)
The first picture is Mattie and the second is Sophie. We thought you might enjoy video this time instead of just pictures. Even when we come home, it will have to be a pretty long time before people really get to meet the girls because their immune systems are so far behind, so we'll try to keep the videos and pics rolling.:)
Thursday, May 13, 2010
Wednesday, May 5, 2010
They seem to look more and more alike every day. We don't have any freckles to help us out, but, Grant, you'll be happy to know that Mattie has a double crown (I think like Seth's) and Sophie only has one swirl in the back of her hair. It's just to bad we already tatooed them! ;)
They both did really well in vibrating seats...which is great because they are shaped somewhat like car seats. Both girls have to be able to sit in a car seat for the amount of time it takes us to get to Shelbyville before we can leave.
Monday, May 3, 2010
Thankfully, the reports coming through channel 5 about the power and oxygen failure possibilities were completely the comments of the news guy and not the hospital. (If by chance someone connected to them or to any news people read this, which I doubt, please pass on to news people that it is very unwise, foolish, ignorant, and unthoughtful-I could probably think of a few other words- to report on something like that without knowing the facts. Even if they had been right about the O2 and Power failures, what good does it do to report it during the crisis. I'll tell you what good it does. It panics families of patients who then flood the hospital with calls and attempt to get to the hospital to make sure their family members are ok. Then the nurses have to deal with family members at the cost of the patients' care. How about waiting to make comments like that until after you have a reason to comment on it other than hyping up hysteria so people will stay glued to the TV all day.) There's my rant. I wanted to call the station, but I've calmed down enough now to just talk bad about them behind their backs. (If you're talkinga bout a station and not a person, does that count as gossip?)
Adam (the host at the hospitality house) and I walked over to the hospital during the downpour to see if there was any way in. If you've never seen a real flash flood, it's pretty impressive. I still don't understand how it comes and goes that quickly and I'm sure no matter how someone tries to explain it, I never will. On the way there, Wwe saw cars up to the windows with water and twenty minutes later the water was completely gone. When we got to the hospital the fire alarm was going off, but it was only because the garage and the lobby were flooding. The basement level of the garage had a torrent going through it and Children's Way was a flood that the cops had to pull someone out of their submerged car from what I was told. The lobby never got more than an inch or two from what I could tell. The staff had it dry by a couple hours later. By the way, if you know anyone who works at a hospital, tell them thanks. When things like this happen, they have to pull 24 hour shifts or more when their replacements can't get to work. I'm not sure how they do the 12 hour shifts that they already do, but I sure am grateful for them.
The hospitality house basement flooded up to the second from the top stair to come into the kitchen, but thankfully stopped there before it started going back down again. Unfortunately, the water took out the hot water heater and the air conditioning unit. With that in mind and the fact the Nashville has is under a water conservation order, we are staying at Amber's parent in Spring Hill for the night until things calm down a little.
Both girls are in cribs now and they are taking nearly all of the feeding by bottle now. They still tucker out before they can finish their bottles on a few of the feeds and the rest simply goes through the tube, but they do a little better each day. They both slowed down a little on weight gain as well because of the extra energy to bottle feed. Mattie is now 5lbs 1oz and Sophie is 4lbs 14oz. I mentioned in the last post that the thing to pray for was that their O2 dependence would decrease, but I found out tonight that the problem for their O2 dependence may actually be their blood count. Both girls are just a little low on their red blood cell count which could account for why they aren't coming off of their O2 a little quicker. They are both working hard to bring their red blood cells up though, so we'll just pray for continued improvement. The nurses and doctors are talking about moving us to the step down unit once their O2 requirement takes the next step down and from their it could potentially be a matter of weeks before they get sent home. (although, when we actually sit down to look at a calendar, it is really only a few weeks before Amber's original due date anway!) They still have to come off of the O2 before anything happens at all and that will only happen on their schedule, though. It is incredible how time flies when you're having fun...or at least when you have lost all sense of time due to never really changing your routine from day to day.
Crimson continues to improve a little each day from what we can tell. We don't get to see Alex and Stacy as often now, but try to keep updated through phone calls and texting. We are also having dinner with another couple whose son is about 3 weeks behind the girls so keep them in your prayers as well. Now we are down the hall from the couple who has the twin boys that the grandfather tried to arrange our kids' marriages for on Easter Sunday and have been blessed to meet them. I wouldn't choose to go through this again in a million years, but I continue to be encouraged by the people we are meeting. The only problem now is that we seem to be collecting babies to worry about! I'm just thankful God is watching over all of them.
Sorry for the incredibly long post. I'm finding it's harder and harder to get time to update...plus we're in the stage when the most exciting thing that happens is that nothing really happens other than growth and maturing. Thanks again for keeping us in your thoughts and prayers.