Another doctor appointment...

Yesterday after I posted on this, I got a call from the pediatrician's office. They were calling to see if I could bring Dylan in today so that he could give his okay for getting rid of the feeding tube. I explained how it was already out and how he had seen the cardiologist and they weren't concerned that it was out, but they wanted to see him anyway. I figured it was okay since the cardiologist wanted me to take him back to the pediatrician soon anyway. So this morning I took him in. And was late for the appointment. Seems like I've been late a lot recently, and I'm one who prefers to be early or right on time. Ah, well.

Anyway, he agreed with the cardiologist that he looks really good. He told me how his son is living in Tuscon (okay, someone correct me here...that can't be spelled right) finishing up stuff to be a cardiologist (but the kind for adults). He said he's in town visiting and he kind of wished his son were there today so he could see Dylan and see what it looks like in a baby. He also told me a horror story they recently had with a patient of his and a feeding tube. I got the impression that he's not a big fan of feeding tubes unless they are really necessary.

After the doctor appointment, I took Molly to meet her preschool teacher and some of the kids who will be in preschool with her. I think she's going to have a blast. There are several others who are like her and will turn 5 (if they haven't already) before December. I think Molly is excited to actually start preschool next week on her birthday. Unfortunately, Lys was having such a good time there that I had to take her out to the car crying and screaming because she didn't want to leave. There were just too many fun toys.

Cardiothoratic follow-up

Dylan had his follow-up this morning. It went well. He didn't like getting the chest x-ray or ekg at all, but both looked really good. We will be able to stop his diuretic medication on Saturday, which will be nice. Since we were bad and never did put the feeding tube back in after Jimmy accidentally pulled it out, the nurse asked me when it came out. I told her how he's been taking all of his feedings by bottle so we just haven't put it back in and she said that's fine. I'm taking that as saying we don't have to put it back in, and so is Russ. So now we take him back in 8 weeks for another follow-up (the appointment is on Halloween), but that's about it. They did recommend that I take him to his pediatrician next week or the week after again, just because he did have major surgery. He's gaining weight and growing and is generally doing really well. He now weighs 7 pounds, 15 oz and is a little over 21 inches.

1st Day of School

Strange to think that school started today. Jimmy is starting the 4th grade and Emma is starting the 1st grade. Emma was a lot more excited about starting school than Jimmy was. I think Jimmy was just a little nervous about knowing which classroom was his since they didn't do a back to school night before school started this year. I do think it helped that Russ gave them both a Father's blessing last night. Lys cracked me up with that though. She sat very good and folded her arms and closed her eyes for theirs. As soon as Emma's was done, she hopped off the couch and announced that it was her turn for a blessing. So she got one. Of course, they didn't let me walk with them to school this morning. Which isn't necessarily a bad thing. :)
Emma was dressed and ready to go like this at least an hour before school started.
Man, Jimmy looks grown-up in this picture.
Just thought I'd add a couple of pictures of Dylan on here. Jimmy accidentally pulled out the feeding tube so I took advantage of it being out and took a couple of pictures.

Kind of funny...in a way...

I've been thinking about how Jimmy spent three weeks in the hospital when he was born because he was premature. Dylan spent two weeks in the hospital. Jimmy didn't really have any problems, he just needed to gain weight and kept losing weight because he kept getting diarrhea. Dylan had open heart surgery. I just think it's kind of funny that Dylan's problem was more serious and he spent less time in the hospital. He came home from the hospital exactly one week sooner than Jimmy. (I know it was exactly one week because they were both born on a Friday and both came home on a Monday.) I really didn't expect Dylan to come home sooner than Jimmy had, but I will say that it's nice that he has.

There are things that were easier about Jimmy being in the hospital than Dylan, and things that were harder. Easier was that he was my first so I didn't have to worry about other children. Lyssa, in particular, started to have a hard time with my leaving her. Still doesn't like me to go places without her, or to go places without me. Russ took the older kids to church with him today while I was staying home with Dylan. Lys refused to go without me. Since Russ was having a hard time getting the others moving to go out the door, he let her win that one. I also didn't have the worry of Jimmy having major surgery. I did worry with his diarrhea though. At one point they stopped all feedings to try to get him over it. It was also harder with Jimmy because I was recovering from a c-section. Needed more rest than I got, which is probably why I ended up with pneumonia a little after he came home. In both cases, Mom helped out a lot. And that's all I say about that before I really start to ramble.

Dylan is doing better and better with taking a bottle. Most of the time he will take almost all, if not all of the bottle. Sometimes he even wants more. If he keeps this up, the speech therapist is going to push to get the feeding tube out. He told me that doctors tend to like to leave feeding tubes in for a while, where speech therapists want them out as soon as they can. I think I'm more with the speech therapist on this one. And I'm pretty sure Dylan is, too.

Adjusting to home...

It has been nice having Dylan home. He even basically slept through the night last night. Unfortunately, I didn't. I kept expecting him to wake soon to eat and so I was waking up every few minutes. I broke down around 4:00 this morning and gave him food through his feeding tube instead of letting him try the bottle first because I was really tired and didn't want to keep waking up if he wasn't going to. He did wake up then. Mostly because Russ accidentally pulled out the feeding tube and so we had to put it back in. Yes, I made Russ do it since he was the one who pulled it out. I don't think he thought I was very nice. :)

Dylan is actually doing better with drinking from the bottle. He usually drinks almost all of it. He's supposed to have 54 ml every 3 hours and often drinks between 40 and 50 ml. One of his nurses had told me that the most they could get him to take by bottle was 10 ml.

The kids are all excited that he's home. Lyssa likes to try to help change his diapers or give him his bottle. Which usually ends up with her just handing the things to me to do. The first morning after he came home I asked Emma to keep an eye on him while I took a shower and let me know if he woke up or anything. Jimmy went in the room to help her keep an eye on him. She asked me if Jimmy could go back downstairs. Guess she didn't want his help.

Must have been some of the influence of reading De's most recent post, but I glanced at myself in the mirror and immediately thought that I don't look old enough to have 5 kids. My first impression was that I look 14. Ah, well. I probably look closer to my actual age to other people. They probably just think I'm insane for having 5 kids. :)

HOME!!!

We were able to bring Dylan home today! Yeah, so other than that, my mind has drawn a complete blank. Can't quite think of things to make this post longer. Guess I don't really need to. We're just happy that he's finally home.

Not quite home

We had hoped to be able to take Dylan home today, especially with the nurse yesterday saying that she thought he would be going home this afternoon. But we weren't. They told me today that they will let him come home probably Sunday or Monday. They want to watch his weight gain, feedings and oxygen intake (they haven't quite decided on if he will be going home with oxygen or not). Plus today his heart has occasionally had an irregular beat. They can't figure out why and while it's not dangerous or anything, want to watch it and try to give him some medicine in the morning if it keeps up to see if that will help. He no longer has an iv. Just has the feeding tube and a very small level of oxygen (one nurse compared it to a small puff of air). He will be coming home with the feeding tube for sure. I wouldn't be surprised if he comes home with oxygen. He will keep his oxygen levels up for a while without the oxygen but it tends to go down lower than they like, especially when he's asleep.

Of course, all of the nurses comment on how cute he is. The picture doesn't show it, but you really should see how red his hair looks in the light. Enough so that Russ thinks his nickname for Dylan may end up being "Red."

Grateful...

I have been thinking a lot the past few days about how grateful I am to a whole lot of people. Everyone has been so supportive of us during this time with Dylan. A lot of prayers have been said in our family's behalf. Many have inquired how Dylan is. Meals have been brought in for us, kids have been watched and taken care of so we could be to the hospital with Dylan, numerous offers of help, flowers sent, gifts given. Over and over I have said how nice people are. As hard as it is to have a tiny newborn baby in the hospital and have heart surgery, I can't imagine how much harder it would be without the love and support everyone has shown, especially without the prayers and fasting and blessings.

So I guess the point of this post is just to say thank you to everyone. Don't know how we would get through this without you.

More good news

They moved Dylan out of the PICU today and to a room on "the floor." Hopefully that means he will get to come home soon. He looked happier to me today and it's really nice to be able to hold him again. When I told russ they moved him, he asked if he'll get lost trying to find his room. I told him yes. He's up on the third floor in room 3077.

Swallow study

Dylan had his swallow study today. He can swallow just fine and doesn't aspirate (I sure hope I have that word right) it into his lungs at all, but it seems to get him too tired. He's most likely using most of his energy in recovering from his surgery and such. So they are going to keep the feeding tube. The nurse said they will likely try to give him a little bit on occasion with a slow flow nipple to see if they can't build up his energy for eating. And they are going to pull out the feeding tube a little bit so that he will actually feel full and it should help his crankiness. But he is now off of most of his medications and just has one iv left (I think...that's all I saw, anyway). It's almost strange to see most of the pumps for the medications gone. Nice, but strange.

Breathing tube is out!

I got a call from the nurse this morning that they have taken the breathing tube out and Dylan is doing well. Said he did really well with his test to take it out and so at rounds this morning they decided to go ahead and take it out a little earlier. She told me they are going to take out his RA wires tomorrow (which are some lines going into his heart...main reason we can't really hold him) so we will get to hold him again tomorrow. That's going to be really nice.

Oh, and I know I'm a bit late on this, but happy birthday this month to Isabel, Di, Mariah, Kelly, JD, Rebecca, Keith, and Chris! (Of course, to Dylan, too!) Hope you all have (or had) a good one! And I hope you are enjoying your new house in Georgia, Brian and Steph.

Some more pictures...

Just thought I'd add a few more pictures of Dylan. He's still doing well. They took out one of his chest tubes this morning. Which he really, really didn't like them doing, but should feel better with it gone. The nurse said he's one of the strongest newborns she's ever worked with. Fights her when she goes to shift him. Just doesn't want to be moved, I guess.

Here's Dylan the day before his surgery. Sleeping away nicely, actually.
These next two pictures are of Dylan the day after surgery. Hard to tell from the pictures, but he sure was staring at me. The big white thing is the padding they kept over his chest while it was open. Really will be nice to have him off the ventilator. Probably tonight or tomorrow.

Today's update on Dylan

Dylan is still doing really well. One doctor (actually a Fellow...someone who has completed the stuff for the MD, but is specializing...can't remember her name for the life of me) told me today that they are all really pleased with how well he's doing and that he's "awesome." They have started to wean him off of some of the medications they've had him on and started weaning him from the ventilator. They hope to be able to remove some, if not all 3 of his chest tubes tomorrow and will most likely take him off the ventilator on Monday. There is a slight chance he'll be taken off the ventilator tomorrow, but probably will be Monday.

He does have the feeding tube now. They put that in last night right after they closed his chest. They are only giving him a small amount to start out with (1 cc per hour) and will probably slowly add more as they give him less of the iv nutrition.

When he's awake he will stare and stare at me. Still haven't held him since the surgery. The nurse today said I could hold him if I wanted, but most likely it would cause him some pain because of the chest tubes. He cried when she moved him a little to shift his position. I decided that as much as I wanted to hold him, I didn't want to hurt him even more, so I didn't. Really did want to hold him though.

Another update...

Everything went well when they closed Dylan's chest. Russ was the one at the hospital when they finished (I had gone this morning and he stayed home to watch the rest of the clan and I came home so he could go down and spend some time with Dylan). He said that he doesn't think there will be much of a scar. He did say they had to move a line they had in him. Apparently it had gotten into his ventricle. Maybe that's why he seemed to be hurting a little more today.

Dylan update

Dylan is still doing well. Well enough, in fact, that they were closing his chest today. (They are probably just finishing up as I'm typing this, actually.) I think the next thing is to start a feeding tube and then get him off the breathing tube. Hopefully those will come just as quickly. He was actually awake when we went to see him yesterday and was awake for a short time today. I'll update more when there's actually more to say.

Out of surgery!

Dylan is out of surgery and doing really well so far. There were no real surprises with his surgery, other than it turned out that his truncus was actually type 2. Right now his numbers are all really good. Thanks for your prayers.

A little about the surgery...

Russ and I had a quick talk with Dr. Hawkins today about the surgery tomorrow. Mostly he told us quickly what he would be doing and why. Most of which I already knew. Mostly from looking up information on truncus. I hadn't looked up any information on his coarctation of the aorta, which they saw in the echos he had over the past few days, mostly because I never could remember what they called it. The nurse today looked it up for us while we held Dylan and it showed how they typically repair it, so by the time we talked to Dr. Hawkins, I was aware of what they would be doing.

The main thing I hadn't realized was that while truncus is rare, truncus with a coarctation of the aorta is extremely rare. Some even think it's impossible to have together, which apparently it isn't. Dr. Hawkins said in the time he's been doing this, he's only seen one other case where the truncus also has the coarctation. He's seen lots of truncus cases and lots of coartation cases, but only one other one together. He said that Dylan will have a 70-80% chance of surviving the surgery. I'd like those numbers to be higher, but at least it's not the other way around.

I'm sure I'm not going to sleep well tonight. His surgery is the first one of the day, so Russ and I need to be to the hospital by 7:30. Earlier if we want to have more time to hold him before the surgery. I'm sure I'm going to cry when they take him back. Russ too. Please remember to keep Dylan in your prayers, especially tomorrow.

Surgery day

They told me today that Dylan will have his surgery on Wednesday. I don't have a time yet for the surgery, but it should be the first surgery of the day. Dr. Hawkins is the surgeon and should be talking to us to let us know exactly what they will be doing for the surgery and what kinds of things to expect. They would do the surgery tomorrow, but he already has one big case for tomorrow and so he wouldn't be able to get to Dylan (who is also a big case) until around 4 or 5. They decided it would just be better to wait until Wednesday morning instead.

Dylan was actually being good enough that they didn't have to sedate him for his echo today. If he started to get upset, they would dip his pacifier in some sugar water and give it to him and he would settle right down. Hopefully his surgery will go just as well and easily.

Pictures and short update

Here are a few pictures of Dylan. I think he's a cutie. He's doing well so far. He will have a sedated echo today and then they will schedule his surgery. The soonest he will have surgery is Tuesday, but we should know today when he will have his surgery.

Anyway, here are a few pictures. The ones with the other kids are from when they were finally able to meet their new brother. Lys cried because she didn't want to leave him. I don't really think any of them wanted to leave him though. They are all anxious to see him again.

Dylan's here!

This is Stacey typing for Cindy.

Dylan arrived today at 2:58. He weighs 6 pounds 4 ounces and so far is doing well. He was of course immediately put into the NICU (luckily, they were in a room that has a window directly to the NICU), where they're putting in IV's and will assess him more there. So far though, mom and baby are doing well. Russ says from the window, Dylan is a cutie. :)