Thursday, May 27, 2010

We just can't seem to leave!

We'll take an informal poll. leave a message to guess which baby is which. They are definitely looking more and more alike. Both girls had to pass their car seat tests to go home. We were'nt thinking and didn't get a picture of Mattie in her car seat for the first time, but we got Sophie above. Mattie is just taking it easy now that her mom and I are the ones taking care of her...either that or she just needs to relax because we're stressing her out! This was their first attempt at co-bedding...and possible their last for a while! Well,...

we were supposed to get out on this past Friday, but Sophie had a little trouble with getting choked on reflux, so she bought another 5 days. Mattie did get out Friday, but we didn't want to drag her all over creation coming back and forth to see Sophie, so we are "rooming in" in Sophie's room. Basically we are responsible for Mattie and the nurses are still in charge of Sophie, but we do most of both of their care....and we are pretty tired. Sleeping in a hospital is fun enough already, add two newborns to the mix and you have a recipe for fatigue! We're really enjoying being with the girls all day though.
Sophie was supposed to get out today...we had already gone through the discharge check out process with the nurse, but then the doctors came in and discussed Sophie's blood pressure. It is running too high recently. High enough that they don't want to let her go before they try to get it regulated and run some tests, but not high enough that they would admit her if she weren't already here. I'm beginning to think that Sophie just has extremely expensive taste and is very high maintenance and enjoys the incredibly expensive room and baby sitting! It looks like we will be home some time this week, but I think I'm gonna quit trying to pick the day...Sophie is just to fond of being here!
When we moved into Sophie's room, the hospital was so full of babies (it was a full moon) that they needed Mattie's basinette. That meant that the girls got to try sleeping in the same bed. It was very cute...but we didn't sleep a wink. We were glad to get them back in seperate beds. We'll just have to let them visit together while they're awake.

video

Tuesday, May 18, 2010

The end is in sight!

I tried to update Tuesday afternoon, but got distracted and left my computer on the floor of Mattie's room for about 5 or 6 hours before we finally had to head back to Spring Hill. Now it is Wednesday night and I have been threatened by sweet ladies at church :) if I didn't get an update on, so here we go.

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:

  1. 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

  2. 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.

  3. 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:)

  4. 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.:)


video video

Thursday, May 13, 2010

To my Dad's office staff...

Ya'll can't possibly be getting any work done for the amount of time it seems you're looking at pictures. Please give my apologies to the poor patients waiting in the waiting room while ya'll are gathered around the computer in the back. :) Just kidding. Thought my parents and in-laws would enjoy showing off getting to hold them.

Grams and Sophie

Pop Pops and Mattie

Papa and Mattie
Nana and Sophie

Living in the tree house

Sophie and Mommy


Mattie and Mommy
We've been moved again. This should be our last move before we get home though. The girls' are in the "Tree House" which is their nickname for the step down unit where they get parents and babies ready to go home. We thought that meant sooner than later, but, unfortunately, it looks like it will be another 2-4 weeks minimum. Apparently their addiction to Oxygen is just a little more demanding than it should be!

Amber had a good first Mother's Day. Thank you to all of you who wished her well. We let both of our parents hold the girls for the first time for Mother's Day. ...Although I feel like our dads kind of snuck a fast one. Some feel very strongly that they should have had to wait until June for Father's Day.

Today we took an infant CPR class. I've had that class before, but it isn't quite the same when you're in college vs. picturing your own child when you are practicing on the dummy. We did get to spend some more time with the other parents of twins, though so that was good. The girls will probably both have an MRI before they leave. Not sure when those will happen. Right now, we are really just being held back by weak lungs.

I guess the worst news in the last day or two was the instruction about sickness prevention once we get home. We were under the impression that we would need to be careful for several months and then get closer to normal while still being careful. Apparently, we get to be overprotective parents for a while. We were told to limit very carefully contact with basically everyone. We've heard the words "chronic lung disease" more times that we can count. I guess we'll see what happens down the road and follow the advice of our pediatrician as the time comes, but I figured I should put the word out now that we are gonna have to have the girls pretty secluded for a while...as much as that breaks our hearts. I'll definitely put more specific things we'll try to do as we get closer to home, but you'll just have to settle for more pics for now. :)

Wednesday, May 5, 2010

Can you notice what is different?

Mattie

Sophie

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.

Both girls are getting all of their feeds from a bottle now. They got their feeding tubes out yesterday morning. So far, they are doing really well. They get pretty tired still, though, so there is a chance that the tubes may have to go back in if they quit eating from fatigue. Sophie has weaned down a little further on Oxygen and we expect Mattie to make that move by tomorrow. If they both do well on the lower level of Oxygen for a couple of days, we'll get moved to the "Tree House" which is the step down unit where they get babies and parents ready for the move home. Hopefully, we will be able to stay in the hospital with the girls at that point and find out what it's like to wake up and change diapers all night long We can't wait...I think. :) Once we get to the Tree House, it should just be a couple of weeks before we can come home so we are starting to see the light at the end of the tunnel.

Monday, May 3, 2010

Hands down, more adventure than we ever wanted...

well, I guess at least the type of adventures you think of wanting anyway! Amber and I have always had a knack for getting ourselves in over our heads and having unusual adventures, but I'm pretty sure I never would have guessed in a million years that we would be in Nashville at a hospitality house when the flood waters came to middle Tennessee! Russ asked me Sunday if I was documenting all of it, so I guess I should let everyone know that we survived the flood with little more than wet feet.

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.