Fiddlers

This weekend is the Indiana Fiddlers' Gathering in Battle Ground, so we went over yesterday afternoon. We had a nice time, and Stian really seemed to enjoy the music. Silje slept through much of it. There was also a square dance later that we didn't get any pictures of, but Stian sat and watched that for a long time too.

Cardiology Appointment

Silje had an appointment yesterday with her cardiologist. We drove down to Indy to meet with her. Incidentally, she does come up to Lafayette occassionally, so we will be able to have other appointments up here, but she wanted us to come to her office for the first appointment following her discharge from the hospital.

First they measured her weight and length. She was 10 lbs 5 oz. So she has gained nicely from last week. And she was 23" long. She was only 21.5" or so last week, but was 21" at birth. I had figured after her measurement last week that her birth measurement had been inaccurate, as that put her in the 90-95th percentile for length. But now I'm thinking last week was inaccurate and her birth measurement and yesterday's were the right ones, and she's just a tall/long baby.

Next they did an EKG. They didn't say much about that, but for some reason Silje really didn't like it. I have no idea why, it's pretty unobtrusive. But she really cried about it, which is odd for her. I don't think Kris and I have ever really heard her cry like that before.

After she calmed down, and fell asleep actually, they took her blood pressure. They took it in both her arm and her leg. There was about a 20 point difference, with her arm reading higher than her leg. This indicates that there is likely some stenosis in the aortic arch, where they had done the repair, as that area supplies blood to the lower part of the body. Dr. A said this wasn't anything to worry about yet, but they would keep an eye on it. If they need to they can put a balloon up into that area and expand it to get it to stretch. This would require an overnight in the hospital, but is not a particularly dangerous procedure.

Next was the echocardiogram. Silje didn't mind this at all, even though it lasted quite awhile. In fact she slept through the first half of it or so. The echo tech looked for a long time, and then Dr. A came in and also took some images. They were looking at the whole heart, but in particular they were looking at the aortic arch and the aortic valve. They both look good. The valve is a little underdeveloped because it was not used much as the arch was interrupted, but Dr. A said it actually looks pretty good. That could be a potential problem in the future, but Dr. A isn't too worried about it. The other thing she mentioned, which she said they had noticed before, but I don't remember them ever saying anything to us about it ealier is that she has higher pressure than normal in her pulminary arteries. I guess this isn't all that uncommon because in younger people they make more of a right angle, and as you get older the go up more and the pressure lessens. But hers is more pressure than normal. So something else that we don't need to be terribly worried about, but they will keep an eye on.

Overall Dr. A thought she was looking really good and was very happy with how she is doing.

Here is the image of the heart that Dr. A gave to us to show us what she was talking about.



After our appointment we stopped by the PICU to say hello. They had told us when we left to come by sometime after she was discharged because they love to see their kids later when they are healthy. So we stopped by and saw a few of the people we had worked with during our time there, including the nurse we got to know the best, Tiffany. She was happy to see Silje again, and see her doing so well. I'm sure it does feel good to them to see these kids later and see that their hard work paid off.

Oh, and yesterday was our 10th wedding anniversary! Going to the cardiologist wasn't the most fun way to celebrate, but getting a pretty good bill of health for our little girl was a good present.

Sleepy Head

Silje turns 6 weeks old tomorrow! On the one hand I can't believe she is already six weeks old, but on the other we've been through so much in her short little life it seems longer than that.

Here's just a cute picture of her sleeping on my shoulder this evening. This is her new favorite way to be held.



And here she is napping the other day. It amazes me that she doesn't need to be swaddled. I swaddled her the first few nights we were home and she kept working at least one, if not both arms out of the swaddle. So I quit bothering with it and she sleeps fine without it. Of course I bought all these really nice muslin swaddling blankets that I'm not using now. Ah well, we'll find another use for them.

New Pool

We got Stian a bigger pool for this summer. He got into it for the first time tonight. He kept saying "I really like this pool!" and "This is really fun!" so I guess it gets two thumbs up from Stian. It's big enough that Kris got into it with him later. I was making dinner at the time though, so didn't get a picture of that.

Here's Stian filling it up the other night:





And then him playing in it tonight:





(Yes, it even has cup holders! Fancy, no?)



Silje was hanging out in her stroller while Stian played.

Silje's First Pediatrician Appointment

Silje has seen about a million different specialists, but yesterday was her first appointment with her normal pediatrician. The appointment was pretty uneventful, except that he thought she looked really good. She's up to 9 lbs 4 oz too, which is great. That means she is still gaining weight now that we are home. We will see him again in two weeks, and if she is still gaining well we can take her off of the fortified breastmilk. Right now she nurses primarily, but gets two bottles a day of breastmilk with formula added to up it's caloric value to help her gain weight. Heart babies often have a hard time gaining weight because they get so exhausted from breastfeeding that they quit before they get enough. So this will be another sign that she is getting stronger.

Here are two pictures I took of her smiling yesterday. She is just starting to do a "social smile" - as they call it. So a smile in response to someone, not just some random smile that babies do in the beginning. She's not consistent in it, but I can sometimes get her to smile by talking to her. She also smiles at the ceiling fan sometimes (.just like big brother used to) but I'm not sure that's really a social smile.





And then a cute picture of big brother. He's still having some issues adjusting to life with another little person in the house, but we've been home less than a week, so hopefully it will get easier with time. He's just been acting up more and being more difficult. Though he doesn't say he has any problems with Silje, and doesn't really appear to, I would expect this acting up is in reaction to her. It might also just be adjusting back to having Mommy and Daddy home again after so long and figuring out where those boundaries lie again.

A Family of Four

Now we are adjusting to being a family of four. Stian is doing pretty well with it, but definitely has his moments of jealousy. We are all lucky that Silje is a very mellow baby. It makes it much easier for Stian that she is pretty calm. Yesterday we took them both to the library, then the farmers' market and then Menards. Silje didn't cry or fuss at all during the outing. Stian would have cried most of the time at her age. I'm happy for Stian that Silje is so chill. I think it would be really hard on him if she demanded so much attention from us all the time. And today we took them to the park and out to lunch. So far it's going pretty well.

Grandma & Grandpa

My parents stayed for one more day after we got home, but then left yesterday morning to return to their own home. My mom was here for two months, and my dad for one. We were all sad to see them go. We are so fortunate that they were able and willing to drop everything and come and help us. I don't know how we could have gotten through this without them.

Here are two pictures from their last day here.

HOME!

We finally got to take Silje home yesterday!

Swim?

Not much to report today. Silje ate well, but we'll see tomorrow if it was enough and if she gained any weight or not. Otherwise we just hung out and cuddled on her.

Sink or Swim

We have several day’s worth to update. First, on Saturday my parents brought Stian down and we went to another nice park in Indianapolis. It was quite hot but we had a nice time anyway.















Then when it was time for my parents to go home, Kris headed up to Battle Ground to spend a couple of night at home. My mom has pictures up on her blog of his time up there, here is just one:



Kris headed home because my friend Laura flew down for 24 hours to visit. It was nice for Kris to have a break from the hospital and to spend some time with our little boy, and it was so nice for me to see Laura and have her entertain me.



As for Silje, she has been doing well. The results of her echo came back that the effusion is still gone. She has been eating pretty well, but still takes some food through the nose. Her neonatologist came in this afternoon and said she had a brilliant idea, we’re going to pull her nose tube and see if she sinks of swims. She said that Silje is taking about 90% of her food by mouth, she’s a good-sized baby, and she will probably do fine. So we’re going to try a couple of days of her taking all of her food by mouth and see if she gains weight. Before they were giving her 65 ml when they gave her a bottle, but now we will give her as much food as she can eat and not worry about it. So if she only takes 50 ml at one feeding we’ll hope she makes up for it at another feeding by taking 80 ml. So we will see how it goes and hope that she is able to gain weight doing this. If she does then maybe they will finally send us home!

In the meantime, we’ll get to look at our little girl without something taped to her face!

Falling Into Place

Today's update is very upbeat. We haven't gotten the green light for going home yet, but it is starting to feel like they are working up to it. Last night Silje took all but about 35ml of her nightly feeds from a bottle. The part they had to put in her tube was at 8:30 last night--which was a little unfair since she had just finished eating at around 7:00. Her normal feeds are three hours apart, so asking her to do one an hour and a half early was probably a bit much. All of the others (midnight, 3:00 and 6:00), she took the whole 65ml from a bottle. And all day today she nursed from mommy like a champ. So, her feeds are definitely getting better.

They came and did a follow-up echo cardiogram today. We didn't get the results of that today, and the tech doing the procedure wasn't giving up any hints, but from just looking at the image with my untrained eye, it looked pretty good. If the echo looks good to the doctors, then Silje can reduce her meds by one.

Next, one of the worries with Interrupted Aortic Arch is that it is often accompanied by something called DiGeorge Syndrome. DiGeorge Syndrome, for those who like to consult Dr. Google, is associated with all sorts of horrible and dreadful things. (To be honest, I haven't actually consulted Dr. Google myself because there's no sense scaring oneself silly any more than one has to!) AND, DiGeorge is really more associated with Type B interrupted arch than with Type A interrupted arch. Silje has/had Type A. But, they did the chromosome test just the same. Today the nurse looked it up in her chart--since no one had told us yet what the result was--and it appears that her chromosome test came back normal. Which, I guess, means that there is no DiGeorge Syndrome. (Thank goodness!)

They also did the MRI today. The results were somewhat expected and are, I have to say with much relief, very positive. They weren't perfect, but we didn't expect them to be. But, and this is the main thing, we can expect no effect whatsoever on her development from the small spots picked up on the MRI. That is, her seizures where caused by something (they can't say exactly what), and that something left some small spots in the MRI. Those spots, however, are something that the brain will completely work around as Silje develops. The neurologist said that she has seen kids that haven't had seizures, who have had no symptoms whatsoever, who have similar spots in MRIs done on them. She went on to say that in the normal aging process, a person can expect to get one such spot per decade of life--that is, a person of 50 probably has five or so such spots. So, in a couple of months, they will re-evaluate Silje and see if she can be taken off the medication that stopped the seizures. It seems that the expectation is that she will no longer need that medicine and the seizures will be gone.

So, it seems that the pieces are falling into place and it looks more and more like we will get to take Silje home in the next few days.

Keep those positive vibes coming. We still hear from many of you every day and we really appreciate the support.

Doing Better

Silje made some progress today in her eating. During the night last night she took some via bottle but had to take some through her tube too. She did better during the day today, she nursed 4 times and took a little more by bottle after nursing once. She also gained a few ounces yesterday, so that was good. We'll see how she does during the night tonight.



Tomorrow she has another echo scheduled and she is finally getting her MRI done.

Hitting the Wall

So, when you're training for a marathon, you can't just train up in a weekend and call it good. You have to work your way up to it over time. That's how the speech and language woman, Linda, put it today. Silje was doing great and meeting all sorts of goals, but then she just ran out of steam. Last night for the 2:00am and the 5:00am feedings, she would only take about half of what she needed by mouth before she was too pooped out to continue and so they had to put the tube back in her nose. This morning she tried nursing for a bit, but she was just too tuckered out, and so we gave her the rest by tube. And at 11:00 we just gave her the whole thing by tube and let her sleep and rest up.

At 2:00, she nursed and did fine. Then at 5:00 she nursed and seemed to do fine, but she fell asleep again. By 6:45 when it was time for us to go (we can't be there from 7:00 to 8:00 during shift change), she was fussing and got hiccups and was inconsoleable. The nurse told Jeni that she could go ahead and nurse Silje for ten or fifteen minutes if she thought that would help. It sure seemed to. By the time we left, Silje was quiet and ready for bed.

Let's hope it goes well tonight with the feedings. But, if it takes a bit longer, that's OK. Nursing is an aerobic activity. And, while perhaps not a marathon, it still takes time and effort to build up the stamina and ability to keep going.

Also, Pam and Don came down from Battle Ground for a visit today. We mostly took turns holding Silje, and had lunch in the hospital cafeteria.