Big Steps

Evelyn is steadily improving. Her lungs appear to be getting stronger each day. She's not needing the oxygen increases as frequently as she was just a few days ago. Her diuretics have been reduced some, since they appear to have been working. Because of the diuretics, her electrolytes are a bit off, but that can be taken care of easily. She's caught up with Jessica on the amount of food she is getting, but instead of getting hers over 2 hours, she gets it over 3, to cut down on possible reflux.

Evelyn likes to sleep in the afternoons, so she's not really active when I visit during the week. She seems to be more active overnight. That's one thing we need to get fixed before she comes home. :)

Evelyn does have some ground to make up though to catch up with Jessica. As you can see from the pictures below, she's got a bit of a head start...


Can you tell what is missing? (Hint... look at the nose)


The nurse also removed the feeding tube from her mouth. So we got a chance to see her face without any tape, tubes or masks.


YAY!!! FREEDOM!!!


Hey! What happened... So Jessica is not completely ready for life without a feeding tube yet. It has been moved from her mouth to her nose, which is good. When she becomes able to feed from a bottle she'll lose this tube too. That should come in a few weeks.

Crazy day in the ICN

Before we get to talking about the girls, just a word about the ICN. Leading up to and into the holiday weekend the room that Jessica and Evelyn are in got down to just three babies. The room has a capacity of eight, but for various reasons, we were down to just our two girls, and one of their buddies, who has been there about a month longer than we have. It was very nice and quiet.

Evidently too quiet...

What a difference a day makes. When I got in this afternoon, they were already up to six babies. As soon as I got there they wheeled another one in, and soon brought in one more that had been transferred in from another hospital. It got a bit crazy in there. Kudos to all the nurses, who handled it masterfully, even if some didn't get their lunch break until after 5 pm.

Now more about our girls. Evelyn is steadily improving. The X-ray from this morning (bright and early at 5 am) showed that she no longer had fluid on her lungs. The extra strength dose of the diuretics she was getting did the trick, and she had full diapers all day long. Even with all that, she was still able to show a weight gain today, bringing her to 1166 grams, or just over 2 lbs 9 oz. Her breathing has gotten better as a result. She is able to stay at 21 % for most of the time, only needing a bump up now and then. She still likes to have a brady (heart rate below 100) every now and then, but I think she does that to make sure that folks are still paying attention to her.

Jessica had a bit rougher day today than I think she was planning when she woke up. Her labs from overnight showed that she had a low hematocrit again, which usually means that she gets a unit of blood. The nurses had a hard time getting a IV to stay in on her this afternoon, and after several attempts they decided to give poor Jessica a break. She was able to get her afternoon feed, but then went NPO, as the nurses were able to get an IV in later this evening. She'll get her unit of blood overnight, and should be able to pick back up on her feeds by late morning tomorrow. The good news for Jessica is that the doctors decided that she is ready for life without the CPAP machine. She is on the nasal cannula full time now. This skews her weight measurement a bit, because up until now, her weight had been taken with the CPAP mask on*. It weighs about an ounce, so technically, she lost an ounce over last night's weight.

*For you technical people out there, there is an understanding that when the babies are wearing a CPAP mask that they will actually be an ounce heavier than their "real" weight. The nurses take this into account when making their assessments and reports, even if they just report the measured weight (with or without the mask) to us.

Pictures of Jessica

We don't really have any updates on the girls--things are going about the same as the last post. However, we do have new pictures of Jessica with the nasal cannula, where you can actually see her face.


Jessica sleeping in her isolet.


Mommy holding Jessica.


Just a reference picture--note the "bracelet" on her left arm. This is actually Jason's wedding band!


Most of our new family. Hopefully we'll be able to get pictures of all four of us soon!

Jessica Joins the Kilo Club

Right now Jessica is our little superstar! She has been doing amazingly well the past few days. Jessica has FINALLY started gaining weight. She now weighs more than 1 kilogram (1.010 kg = 2 lbs 3.5 oz)!!! She is also starting to come off of her CPAP. They are in the process of weaning her off the CPAP and transitioning her to the nasal cannula. A nasal cannula is the thin tubing that sits under the nose and tucks behind the ears (except her ears won't hold it in place so we have to tape it to her cheeks). She's doing very well with the nasal cannula, so hopefully she'll be able to come off the CPAP completely in the next couple of days. It was so nice to see her whole face and head without the CPAP on! Jessica is continuing to handle her feeds well and has reached her goal of 5.25 oz per day.

Evelyn is still having kind of a rough time. She still has a little bit of fluid on her lungs, but the fluid is beginning to drain off. She has steadily been improving on keeping her oxygen sats up, but still needs a little help from time to time, especially if she's being moved around or at the end of her feeds when she has a full belly pushing up on her lungs. Evelyn is holding her weight at 2 lbs 8 oz. They were working on increasing her feeds today. I think she's up to about 4.5 oz per day. Hopefully the rest of the fluid on her lungs will drain off soon and she'll be able to gain some more weight since she won't have to be fighting so hard to breath.

Exploding diaper, take 1

So I showed up at just the right time yesterday. As I walk into the ICN, I see Cynthia and Jessica's nurse huddled over top of her bed. I thought that maybe there was something wrong, but no, they had just finished cleaning Jessica's isolet. Evidently, Jessica's diaper is not exactly fitting as well as it once was, and well lets just say, it sounded messy. She may move to the next larger diaper because as her nurse said, "I only like to have to do this once.".

Otherwise things are fairly quiet for our girls this week. Jessica is getting closer and closer to getting a chance to try to go without the CPAP. She held her sats (oxygen saturation) up basically the entire time I was there yesterday afternoon, including a few minutes where we weren't able to get a good seal with the mask.

Evelyn is a little behind with her sats. The doctors did an X-ray on her yesterday and it showed that she does have a little bit of fluid on her lungs, so they have started her on the same diuretics that Jessica has been on. If she responds as well as Jessica did, then that shouldn't be a problem for long.

The problem with being on diuretics is that it makes it harder for the girls to gain weight. Slowly but surely they are increasing, although both girls have been down in their weight the past few days.

It seems like both girls enjoy eating. Aside from a few cases of reflux, while they are getting feeds, you barely hear a peep out of them. If you have to take their feeds away for a period of time, such as when they get a blood transfusion, you will definitely hear about it.

Darn Flu

Well, the flu bug has hit Durham again. The ICN has reinstated the flu restrictions. This means that only parents and grandparents are allowed to see the babies. Bummer. But it is for good reason, and we do appreciate taking precautions to keep those nasty bugs out.

The girls had a so-so day today. Both girls needed a unit of blood, due to low hematocrit levels. This is expected from time to time. This means that they didn't get to eat as much today. When they get blood they have to be NPO (Latin for nothing by mouth) for four hours prior to and four hours following the transfusion. They also both had to get new IV lines to get the blood with. They were not real happy this afternoon, as you might can imagine.

They should be a bit happier tomorrow as they should be able to resume their normal feeds.

If only it was this hard for me to gain weight...

Everything is still going well. Both girls are handling their feeds well, and they are increasing each day. Evelyn may have a little reflux problem, but that's not much to worry about. I was watching her near the end of her afternoon feed and she started getting a big fidgety. She was laying on her tummy and starting arching her back as if she was trying ease her tummy off. They don't make Tums small enough for her. :)

Jessica is doing a bit better than Evelyn with her oxygen. She's very rarely ever desatting (dropping her oxygen saturation below 85%). She's probably a bit closer to getting a chance to try handling things without the CPAP. Stay tuned...

Jessica's weight is up and down day by day. She's getting feeds and extra calories, but they just don't seem to stick yet. After changing her diaper today, I think I know why!!! Whew! Hopefully, she'll have put some weight on today. She's at about 2 lbs 2 oz, which is great, but we really want her to start packing on the ounces. Evelyn is at a soild 2 lbs 6 oz, and doesn't seem to have a problem adding a little bit each day.



Everyone has been great in the ICN. The nurses are wonderful and are just the best people. Even though we've got the best doctors, best medicines and best nurses around, sometimes bad things happen that no one can do anything about. We just want to lift up all of the mommies and daddies of all of the babies that are in the ICN. We especially want to pray for those who don't get to take their babies home with them.