No More Tube

This morning they basically told us that if Silje can take nothing via the feeding tube for 48 hours, she will be ready to go home. They fed her through the tube last this morning at 2:00am. So, I started counting from that hour.

They went on to add that we would need to make sure that she is gaining weight feeding only by mouth. So, that adds an extra twist. But it does tell me that if things continue to progress, we are getting ever closer to taking her home.

Now, the reason they fed her through the tube at 2:00 this morning was that she wasn't awake enough to take a bottle. The nurse today said that maybe if the tube hadn't been there, they might have had more incentive to wake her up--and not have to put in a tube. I'm not saying that they should have done that last night--it might not have been time yet. But, the nurse today cleared it with the doctor and they removed the tube for tonight. So, for the first time since she was born--those first 24 hours--she doesn't have a tube of some sort in her nose or mouth.



The OT and PT folks came by, too, today, and gave their assessment. Nothing in the assessment would delay her going home. There are some things we need to work on, of course, but it is all stuff we can do at home.

Eating Progress

Silje continues to make good progress with her eating. During the day today she took almost all of her food orally, which is huge. Her 9:00 am feeding she took all 65 ml by bottle. At her noon feeding she nursed for awhile and then took some from the bottle. At 3:00 she nursed really well and didn't take anything from the bottle. And at 6:00 she nursed and then fell back asleep, so they did end up giving her some food through her tube because she hadn't nursed for very long before conking out. We'll see how she does overnight tonight. They told us this morning that she slept all night last night and they couldn't get her to wake up to take a bottle, so they fed her through the tube during the night.

She had a good day. She was awake for the most part from between 9:00 am and 3:30 pm, but then she fell asleep after her 3:00 pm feeding and woke up long enough to nurse a little at 6:00 and went back to sleep. Hopefully she will sleep well again tonight.

Otherwise it was a quiet day. Kris's coworker Jen stopped by for a visit. That was fun. Now that we are no longer terrified the days get a little long and boring. Especially over the long weekend when all of the therapists are off. Hopefully we'll get visits from the speech therapist, the physical therapist and the occupational therapist tomorrow. So a visit from Jen was a nice diversion in a quiet day. Silje slept through her visit though.

Continuing to Improve

Today we had a visit from grandma and grandpa and Stian. It had been a week since Jeni had seen him. I went up to Battle Ground on Thursday, so I had seen him more recently. Stian has been keeping grandma and grandpa busy. We're very glad they are able to stay with him while we spend all this time in Indianapolis. I know it's a lot of work for them to keep track of an active three and a half year old, but it sure is appreciated.

We went to a park in Carmel, IN, which is near here. The park had a large man-made hill with huge stones leading up one face of it. This reminded Jeni and me of Avebury in England. What is it about large rocks that draws one in? There was also a playground and water area where people about Stian's age could splash and cool off in the warm weather. This was a surprisingly nice little park. We took a million pictures and I'm just going to go ahead and post a bunch below because the day was full of fun and sunshine.

Later in the afternoon, after Pam, Don and Stian had headed back north, and we got back over to the hospital, Silje had been making further steps in her progress. They increased her food volume again, we were able to do more bottle feeding and Jeni was able to nurse her; albeit after pumping off most of her supply--we don't want to waterboard our little one! Moreover, they removed the last needle from her little body when they took out her IV line. She has now only a lead to check heart and blood oxygen, and the feeding tube through her nose. She can wear her little outfit with both arms in the sleeves!

We still don't know how long we have to go, but if she continues to eat well, and the physical therapy (PT) and occupational therapy (OT) folks say she's doing well, I don't imagine it will be that much longer. PT and OT don't work weekends and holidays, so we won't get a visit from them until Tuesday. In the meantime, we can continue to work on eating--and, of course, cuddling. We have spent hours with Silje in our arms and it has been great.

A Quiet Day

We had a pretty quiet day today. They are increasing her food amount, they will do a follow-up echo cardiogram in a week, the MRI will be done just before she is discharged. Today was more learning to drink from the bottle, learning to breast feed and basically getting stronger and healthier. Silje is doing all of these things like a champ. We sat and held her for a long time today--while the radio was doing its '80's Weekend.

Oh, and I got to give Silje a bath today. The nurse helped me out by telling me what to do, but I did all of the bathing--including the hair washing. There were parts of the bath that Silje did not like, but the hair washing was quite relaxing; even if the hair brushing was not...





You will note that my phone lacks a bit in the picture-taking arena.

In any event, after the bath, 15 ml by bottle and being awake for nearly two hours, it was time to drop off for a little snooze again.

No Residual Effusion

A couple of things to report today. Both of them very positive.

They came in with their echo cardiogram machine shortly after lunch today. The person doing the procedure is not supposed to let on what the results are, but we got her to say something along the lines of "have a good weekend, you won't be seeing me again" instead of something like "See ya later." So, we knew that the news was good. A bit later the nurse came in to confirm that the doctor had looked at the results and said that there was "no residual effusion," that the fluid around her heart was gone now.

Also, we've been working on eating. This morning, before I got here, Jeni worked with the speech and language pathologist to give Silje a bottle. She only drank 5ml and they could hear that there was some congestion, but they couldn't really tell where. However, at 12:00 and 3:00 this afternoon, Silje drank 10ml and 15ml right down. No congestion, no problems at all. She did great. They still want to go slow with the learning process, but this was excellent progress.

So, everything is moving in the right direction.

Clothes & a Bottle

Silje's new nurse in the NICU decided it was time we got Silje into some clothes. Poor little girl has been naked except for a diaper and a blanket since she was diagnosed. So the nurse dug through their stash and found a few things that ought to fit her. Most of their stash is in preemie size, so we'll have to have Grandma dig through her clothes and bring down a few things this weekend.



Do you know how hard it is to take a picture of a child in your lap with an iphone? Not easy I assure you! Because she has the IV in her one arm and this outfit was long sleeved, we opted to just leave her arm out.

Silje also had her first go at a bottle this afternoon. She did well. She took probably 8 mL, which is not much, but still really good. She was good at it, she didn't get stressed out and she was interested in it and wanted to take it. But she started to get congested so the speech therapist decided we ought to stop and try again tomorrow.

Finally to the NICU

Well, we didn't post an update yesterday because there wasn't much to update. The echo in the morning came back and there was slightly more of an effusion than the previous day. Not enough to be TOO concerned about, but enough to keep Silje in the PICU one more day.

Silje slept the ENTIRE day. She was up for about 10 minutes around noon and then from 8:30 until about 10:30 in the evening, but otherwise she was asleep the whole day. It was kinda boring for Jeni and me....

Today, the effusion was "unchanged to maybe slightly smaller" and Silje got the go-ahead to move to the NICU.

While we waited for the transport team, Jeni's parents arrived. Pam finally got the chance to hold her granddaughter again





The transport team got her over to the NICU and Jeni and I were able to come up and see her in her new digs.

Not So Fast...

OK, so a small delay in getting kicked out. We had the bags in the car, the transport team was assembled in the hallway and then the doctor read the echo cardiogram--there was a slight effusion evident. So, to be on the safe side, they are keeping Silje here one more day and they will do a new echo in the morning and see how things look.

The effusion is a small amount of blood captured inside the pericardium (the sac around the heart). That blood had to come from somewhere and they want to make sure there doesn't get to be more. The leads from the pace maker came out this morning, so that could have caused it, and the RA tube came out, so that could be the culprit. Either way, if they needed to drain anything from the pericardium, that would be done here in the children's hospital and they didn't want her to get all the way over to the NICU just to come back to the PICU.

So, mostly just a quiet day here holding our little girl.

The speech and language pathologist was by and was very impressed by Silje's pacifier sucking abilities--even with the added level of difficulty of the pacifier having been dipped in mother's milk! She's very advanced....

So, tomorrow, off to the NICU and the wonders of learning how to swallow.

Kicking Us Out

The cardiologist and the pediatric intensivist came around on rounds this morning and rather cavalierly unplugged Silje’s pacemaker saying “Oh, we think she’ll probably be fine.” Kris’s and my response was “What do you mean you THINK she’ll PROBABLY be fine?!” They laughed. Hmmm. But so they say once the heart goes back into sinus rhythm it’s unlikely to go out of it again. And so far they have been right. She’s been just fine today.

And then later in the day the cardiac surgeon came by with the intesivist and he said he would take out her pacemaker wires and RA line in the morning and then they were kicking us out of the PICU. They are sending us back to the NICU tomorrow. This is a good thing. And so we can begin in earnest the process of learning how to nurse again. Silje has been going to town on the pacifier today, so she’s ready. Hopefully it won’t be too much of a struggle, though they tell us it certainly could be.

They are going to wait on doing the MRI until closer to when they send us home – whenever that will be. She’ll need to be intubated again for that, though only for an hour or so, and they don’t want to mess up her progress with feeding and such.

Silje pretty much slept through the night last night. And consequently has been awake just about all day – with little tiny 10 minute cat naps here and there. She’s been out of bed and in our arms quite a bit, which has been fun.

Gooder News

We've been here in Indy for over a week. Tomorrow will be a week in the PICU. Time for gooder news, that's what I say.

First, the update--the things we learned after we got back from the day pictured below. When I got back to the room, Silje had her nasal cannula (the tube feeding air to her nostrils) in her mouth and she was sucking on it. Silly girl! I moved it to her nose again and she got very grumpy. She looked like she wanted something to suck on. I gave her a pacifier. She's not very good at it, but she took it in her mouth and started chewing and sucking on it a bit. In most babies, this might not be remarkable. But just yesterday they were telling us how difficult it is for heart babies to learn this again after their surgeries.

Next, I noticed that the pacemaker had two orange lights (one for atrium, one for ventricle) instead of the green lights it has had up til now. The nurse confirmed that Silje's heart is indeed doing its own sinus rythmn, just not all the time. I'm not the expert, but I think this is a very good sign that she will not have to have a permanent pacemaker--another thing they were explaining yesterday that made us a bit down. If her heart takes over a bit better, and they can take the pacemaker off, then it's all the sooner over to the NICU again and one more step on the road to a very good recovery.

Also, they said that at 4:00 this afternoon, they were going to stop her infusion of TPN (food stuff straight into the blood via the heart), so she would no longer need the RA tube going to her heart (I think RA stands for right atrium). This is another step toward getting over to the NICU.

Finally, the nurse helped get Silje into her mother's arms for the first time since Thursday May 12th.



and Silje just looked so much more bright-eyed this afternoon than she has all week



So, things seem to be on an upward trend as pertains to Silje.

Meanwhile, Pam and Don brought Stian to us this morning for his first visit since last Saturday. He got to meet his little sister for the first time. Silje gave Stian a pink pig as a gift (he named the pig Charlie--it's a girl pig). And we went to a park in Zionsville, to an ice cream shoppe (Stian got bubble gum flavored ice cream--we all cringed) and then back to the hospital where we had some lunch in the cafeteria, mommy read Stian some stories and we all learned of the day's updates on our little girl.

Poem

Some days are better than others. There has been nothing in particular that has happened today to make it a harder day, but it has been. I guess speaking with a cardiac surgeon, a cardiologist who specializes in pacemakers, a pediatric intensivist, a neurologist, a speech therapist, a physical therapist and an occupational therapist all in the span of like 5 hours is just a little much.

On the bright side, they are hoping to get her 100% on breast milk tomorrow, I got to change her diaper for the first time today, they think they will finally let us hold her tomorrow, and I get to see my little boy tomorrow, who I miss something fierce.

So today seems like a good day to share a poem written by my awesome doula, Tammy. She sent it a couple of days ago and it just really captures how I’ve been feeling.


For Jeni

Tubes snake around my daughter
Feeding her
And feeding on her;
Too small
To have words for the things they are doing
The things she is hearing, feeling
Too new to remember anything about fear or doubt,
Accepting
All we give her
What we think she needs,
What they tell us
Must be done.
But my right hand wants
To rip out the tubes
Rip out my hair
Rip out anything blocking her perfection
To reveal the essence of this child,
Let her butterfly wings unfold
The rest of the way.
You should see her smile
Sweet lips without the ventilator
You should hear her cry – music!
Unencumbered by tape
We should be able to hold her close, new skin on old
Or swaddled in something hand-knit
As we pass her back and forth
While she sleeps.
I want to rest my head on her tiny pigeon chest
And listen to her heart beat
Listen to her very center
Drumming steady, strong and true.
So I wait, holding onto this vision,
Left hand holding onto the right,
Tight atop my own heart
Pulsing
To the rhythm of hope.

T. Sandel – May 17, 2011

Cheerier

So, the doctors sounded much cheerier this morning. During rounds they all went through the various levels of this and amounts of that how she is responding to various things. She hasn't had any more seizures since yesterday afternoon, so they said her breathing tube could probably come out this afternoon after they got some levels.

Well, Silje didn't want to wait for some dopey old levels to be taken, she wanted the breathing tube out now! Around noon she had had it and she gave it a good yank. Well, it didn't come all the way out, of course (it's about 10 inches in there!), but it did come out enough to be an obstruction to her breathing. Oh, hooray. As if dad's morning hadn't been full enough.

Though they claimed she was never in any real danger, the whole scene still made me nervous. There were six in the room. Mostly not doing much, but one was bagging her and it wasn't helping. They decided that they would just go ahead and remove the tube the rest of the way.

Then her breathing went up to about 100 breaths per minute (take a moment and see if you can do that!), and that made me more nervous. But, her oxygen level was rising and after about 10 minutes, she started to slow her breathing and things started to calm down.

So, she looks like this!



I think she's going to need another "spa day" to get a facial to get the rest of the tape remnants off her face. But for now, I'm just happy to see her cheeks.

Cutest Little Feeding Tube EVER!

OK, so we need a picture for the day. I wasn't going to put one up because things hadn't changed that much. But, alas, a few minutes ago I decided that things HAD changed a bit.

Silje's night nurse last night decided it would be "Spa Day." Silje had had such a rough hair day yesterday with EEG hair, so the nurse washed her hair, did it up with her little gauze bow. While she was working her hair, the nurse decided maybe a little Mohawk would be the way to go.



And she put little, cute pink booties on her




If you look at the first picture, you can see the green tube going into her nose. That tube is feeding her Jeni's milk. 10ml over five hours. Sounds very comforting, doesn't it? Well, it's a start.

One Week Old

Silje turned one week old this morning at 1:24am. Yep, one whole entire week! Seven whole days.

She's had a lot going on in her short little life. She's had tape on her face almost her entire life. It doesn't seem fair.

Her heart and everything associated with the surgery continue to make good progress. She continues to have some small seizures in her right arm, though the medicine seems to be helping. Once the medicine for that gets balanced out and dependable, then the breathing tube can come out and we can think about her being transferred back over to the NICU.

A couple of lines have come out today. The ones in her belly button are out. The one giving her heart-strengthening medicine is out. Her catheter is out. So, there are definitely fewer things poking her. Though, they did add a feeding tube (through her cute little nose), so there is one more thing poking her. The feeding tube means that she can start to get mother's milk. Jeni has been pumping and the nursing staff have been freezing it away getting ready for her to have it. They will start with the earliest milk and move up to the most recent milk. There should still be milk on tap, so to speak, by the time she's ready to start nursing.

As to the seizures: they aren't big. They are very localized. They caught one on the EEG they did yesterday and the neurologist said it was very localized. He said he couldn't tell what is causing it until they can do a CT scan or, better yet, an MRI. In the night they did a CT scan, but there wasn't anything conclusive on that. So, very mysterious. They really need to do an MRI to try to find something more conclusive. But, since the MRI is a big magnet, and she has wires going into her heart, the MRI will have to wait.

The heart surgeon pointed out, though, that it doesn't really matter at this point what an MRI might point to, the treatment would be the same as what she is getting. So, no matter what is causing the seizures, the treatment would be the same. So, I guess we can wait a number of days for the MRI.

We'll let her little body rest and recover from big surgery. We'll let her get stabilized on her meds. We'll get to the point of removing the breathing tube, then the point of removing the pace maker. Then we'll go from there.

Things really are going well, it's just a lot of waiting. ... and a long time to have tape on your face.

Syttende Mai

It hasn't gone completely unnoticed by me that today is Syttende Mai.



Maybe our newest little one will be ready to participate in the barnetog next year!

The Day After

Well, today has been a mixed bag. We don't know what to think at the moment. And it starts weighing pretty heavily.

First of all, from a cardiac standpoint, Silje is doing great. Her heart is pumping at a great rate, her blood oxygen level is way up there, her breathing is good. All the stuff that surgery was supposed to fix seems to be fixed. We were in a couple of times in the night and when we came in this morning, we found that one of the night nurses had made a bow out of gauze and put it in her hair, and put her monkey lovey in her bed with her. It was dreadfully cute



And the nurses were very positive saying that she was doing "stellar." So, that was wonderful to hear.

This afternoon, however, her right hand started moving rhythmically, and then her foot joined in. The nurse said it had done it once in the night, too, but by the time the doctor on the floor got there, it had stopped. Well, this time it stopped as well, but after a minute or so. Then, sometime later it did it again and the doctor had the nurse give her something to stop the seizure.

That worked for a couple of hours, in which time the doctor spoke with a neurologist who suggested a different medicine to try. The neurologist also called for an EEG.

So, in came another team of folks with their specialized equipment and began hooking up electrodes to her head.



She had still another seizure as they were finishing up the EEG, so maybe the neurologist can give us a good idea as to what is going on with her. The new medicine is supposed to make her a bit sleepy at first, and then those effects wear off and she shouldn't notice them after a few days. But, since it makes her sleepy to start with, they will wait a day to take her off the ventilator. While she was awake today, she was moving her mouth again like she wanted to nurse. So, hopefully we can get her to that point sooner rather than later.

And after they removed all those electrodes, she had one really amazing hairdo!



We take it hour by hour and work at taking it all in, but we start thinking that at some point our little girl, just six days old, could maybe have a little break from things and start enjoying life. She is a sweetheart.

Recovery: The Beginning

We're back in the room. Silje has been settled into place. It's still a pretty amazing scene, however. There are even more tubes, wires and electronic gizmos attached to this little girl. She's on the breathing machine (for the next day or so), on a pace maker (for the next few days or so) and they have her pretty heavily sedated so that she doesn't wake up too much.



Pace maker: apparently, as it has been explained to me just moments ago, the beat of the heart begins in the right atrium at the top of the heart, causing it to contract, moves along the side of the heart down to some specialized cells on the ventricle, causing it to contract. Silje's heart is initiating that beat, at the top of the heart, but after surgery, there is some swelling which causes an interruption of the electrical flow to the ventricle. That's where the pace maker comes in. It sees that the atrium has started a beat, and tells the ventricle to go ahead and beat, even though the ventricle didn't hear if from the atrium. So, Silje's heart is actually pacing itself, but the two parts need some help communicating. ...or so I understand it!

Dr. Abraham stopped by to give us the update on how surgery went. He said that everything went as planned, everything went well and Silje tolerated it all really well. He explained the part about the swelling, but Abarbedell explained about the flow of electricity. (The things we would all know had we been paying closer attention in whatever class that was.)

Jeni and I were allowed in to see her first, then Jeni's parents were allowed in.



Dr. P was just in to do a follow-up echo cardiogram (I didn't catch his full name all that well), and everything is looking like it should--blood flowing where it is supposed to be, and not flowing where it shouldn't. He was very indulgent to a curious daddy asking questions over his shoulder. He could see the valves in the heart clearly, but with all the bandaging, he only got a "high up" view of the aortic arch. It seemed to be all connected, though, and that's what this was all about.



Now we wait again and watch her progress through the night and into tomorrow and the next days.

We have really appreciated the thoughts and words of so many people. It may have seemed like I should have been focusing on my daughter more during this surgery, but I have to say that there wasn't much else going on in the waiting room this morning. So, it was a nice disctraction to have people commenting and passing along their well wishes.

Let's see what tomorrow brings, ...now that there is a tomorrow.

Closing

They are closing. We were told that in about 15 or 20 minutes they will take us back up to the PICU (where we spent the night), and wait for our baby girl to come back to her room.

She will recover in the pediatric intensive care unit--the room she was in last night, and we will be able to be with her. They won't, probably, wake her up until tomorrow, we'll just watch as she starts recuperate from the procedure today.

If I get a chance, I'll update again in a while. For now, I'm going to pack up things and get ready to go up to the room.

Off the Pump

Just got word that Silje is off the heart pump. They need to check her circulation before they start closing her up. Everything is going well.

So, it would seem that they have completed her arch and taken care of the hole between the ventricles. Let's hope they were able to do all of it in one surgery.

We're still a bit on edge here in the waiting room, waiting for some more final information, but this is good news so far.

We've heard from a whole lot of people this morning. The vibe is palpable....

Everything Going Well

We were just updated via the waiting room people, who are updated from the surgeon's nurse, that the surgery is ongoing, but everything is going just fine.

Deep breaths....

Waiting...

That's her on the screen, "lo..s, b" with a surgeon mask behind the time 8:27 showing the procedure is in process...