November 19, 2011

Smiles


There's nothing that makes me happier than seeing these two smiling faces each morning.

November 13, 2011

An Update

I thought it was going to be so nice to slip back into our normal (non-hospital) routine this week. Just like pulling on your favorite pair of jeans that have that tear on the back pocket and fit in all the right places.

Instead, it was like trying on your jeans from high school 2 weeks after giving birth. You know you used to fit in them, but nothing is where it is supposed to be and you aren't quite sure how you'll ever be able to breath again.

It was kind of a rough week.

BUT! Thankfully, none of it was a medical emergency or involved staring at monitors. After a quiet Friday and Saturday, I thought I was ready to face our week of Travis going back to work full time and me taking on the kids full time. However, by Tuesday afternoon, I wanted to throw in the towel and rent the house down the street for the Grandmothers to move in to.

In all the chaos of our month in the hospital, I'd forgotten just how hard it is to care for 2 kids this young at the same time. Samuel is doing very well, but he is still fragile and on certain restrictions because of his sternotomy. For the first 3 or 4 days at home, he was still needing some pain medication to help keep him comfortable. Mostly, it was just Tylenol. He's continued to have some trouble with his stomach and that was probably part of his problem. It was hard to know which was bothering him. So, in order to cover my bases, he got Tylenol and a little glycerin. After filling up a few diapers, he seemed much happier.

You can tell that he is still sore, and will cry after he coughs or sneezes. As the week progressed, it has lessened. Now, he just sort of grimaces after something like that. He hasn't had any pain medication for a while and seems to be healing well. He's still not super comfortable with being on his stomach or on your shoulder, so it can be awkward to carry him around. But just today, he took a nap on my shoulder in church and seemed pretty content, so maybe we are going to turn that corner this week!

Luke has been excited to have his little world back to normal. He is definitely TWO now and spends each day alternately delighting me with his wonder and clever antics, and frustrating me to no end with his stubbornness and trouble making. He's reaching all these milestones of things like learning how to put on his shoes and spit after brushing his teeth. But, he's also figured out a way to rig the furniture so that he can catapult himself into Sam's crib, regardless of whether Sam is in there or not. He doesn't seem to understand the concept that we all just went through a nightmare to make sure his little brother gets to a chance to be healthy and whole, and that we would prefer if he didn't succumb to Death By Toddler.

We have survived, though, so I shouldn't complain too much. Samuel is doing better, Luke will eventually learn, and I am going to bed.

Coming next week: The endless parade of doctor's appointments resumes! Geneticist, Pediatrician, and Surgeon, Oh My!


November 4, 2011

Day 24: The LAST Day

When I brought Luke to the hospital this morning to trade off with Travis, it was obvious that our frustration levels were beginning to get out of control. It seemed like we were going to be stuck in the hospital, not because Samuel needed to be there, but because he was too wiggly to get an accurate reading of his oxygen. The monitor is attached to his little toes/fingers or feet/hand and when he's feeling good and waving around, it is nearly impossible to get a good reading. The numbers go all over the place or it just gives up trying and beeps until he slows down again. It has been a pain to deal with the entire time we've been in the hospital, but was truly annoying now that it was the only thing keeping us there.

Abour 15 minutes after we tagged out and Travis left with Luke, the nurse came in and told me the glorious news that they were discharging us. Since I'd been out of the loop for the morning, I didn't realize just how close they were to making the decision and had already settled in for the day.

The nurse then turned off that blasted monitor, peeled off his leads, and let me hold my baby, completely untethered for the first time in what felt like forever. We could move around the room. We could sit on the couch to feed. We could walk down the hall. It was awesome.

It, of course, took forever to get the paperwork finished and to meet with the doctors one last time. I knew we wouldn't be let go immediately, but those two hours seemed to be an eternity.

FINALLY, around 2 o'clock, I pulled away from the hospital with a baby in the back seat. I kept feeling like I was doing something scandalous. Like any minute, they would come running out and take him away from me again.

Luckily, no one called me back and we made it home safe and sound. Samuel is amazing and is acting like a completely normal baby. He's been happy and smiley and hungry today. He gets a little fussy about 30 minutes before his next dose of Tylenol, but I don't blame him. The kid has had two surgeries in less than 3 weeks and he has handled it all so well. I would have been complaining and whining and popping narcotics as fast as they would give them to me. But Sam...he just needs a little Tylenol and he's just fine.

Amazing.

I've been kind of giddy all evening. Luke has been so excited to have both of his parents here at the same time. He sat at the dinner table with us tonight and kept looking back and forth between the two of us and grinning. He's not a very verbal kid, but it was evident in his delight and demeanor that he was glad his world was back to normal.
Me too, kid. Me too.

Day 24

For all you non-Facebook people:
WE ARE GOING HOME TODAY!!


!!!!!!!!!!

November 3, 2011

Day 23

Still in the hospital.

Better.

But still here.

All we need at this point is for Samuel's oxygen saturation levels to stabilize when he's off the oxygen. He's doing better, but wasn't consistent enough for discharge. By this afternoon, he was pretty good in the 88-92 range. They would prefer mid to upper 90's. It will come. We struggled with this some after the last surgery. It seems to be taking a little longer this time, though.

Bizarrely enough, this surgery is apparently more painful to recover from. The extra incision is right at the top of his belly, so with every breath, it moves. His pain levels are improving and he is much more comfortable, so he's taking deeper breaths and is moving around more. When I came in this morning, Travis had him on his shoulder doing some "vigorous" patting, trying to help loosen up his lungs. I continued to get him out of bed during the day and help him sit up more. It really seemed to help his breathing. I'm glad he feels better and is acting more normal again. 

Travis spent the night last night and handled the constant interruptions better. I stayed at the hospital for about 10 hours today, and Travis is back for another night. Now that our Grandma Day Care has closed up shop, we are on 12 hours shifts, switching between the two boys. I really hope he will be totally weaned off the oxygen overnight and we will be heading home tomorrow.



I am beyond ready to bring this cute kid home.


November 2, 2011

Day 22

I returned to the hospital about 10:30 Tuesday night to send Travis home to get some sleep. Now that we are on the 8th floor, he has a private room...which means a nurse sticks her head in every few hours. No one to monitor Sam all the time. So, I grabbed a pillow and a blanket and settled in for a long night in his room. Having just spent 5 nights in the hospital when I was recovering from the C-section, I knew I would get very little sleep. Despite the fact that Samuel was asleep most of the time, people were in a out at least every 2 hours. Add to the fact that his monitor alarm would beep every time his oxygen saturation would slip even a number or two, and I was begging Travis to come back by 7 this morning. Luckily, he was awake before my SOS text arrived and he was at the hospital shortly after.

Samuel had an okay night. He has needed to remain on oxygen this whole time. For a while last night, he kept pulling his nasal tube out, so we switched to the blow-by oxygen. However, the flow was hard to keep by his face since he wiggles so much. This kept the monitor alarm beeping all night long. Luckily, I've been around this block before, so I had no qualms pushing that silence button all by myself. (I'm sure I'm becoming one of those moms that nurses hate.) They put the nasal tube back in this morning, and he's handling it better now.

The best guess from the doctors is that the pouch where Samuel's pacemaker was insterted is sore and it's causing him to not want to breath deeply. Just a little bit of oxygen makes his numbers stable, so it doesn't seem to be indicative of a big problem. They are hoping his discomfort will settle and he will be able to breath better soon. Actually, by late this afternoon, he was already doing better. They turned him down to just an 1/8th of a liter and he's handled it well. We can't go home without stable oxygen saturation levels, so this is kind of an important step. They will turn it off tonight and see how he handles it.

He has finally been able to get rid of some of the air in his tummy. Just in the 8 hours I was gone from the hospital today, he was markedly different. You can now see the outline of his pacemaker on his belly, whereas before it was all so distended that he looked like he was 9 month pregnant, popped out belly button and all! This seems to have made the biggest difference in helping him feel more like himself. He is content when he is awake and has started to eat better and more frequently. Again...all things that point towards us heading home. Go Sam! Way to fart, baby!

(Just an aside for my Gtown girls...who knew I'd ever spend so much time talking about bodily functions?!?)

They switched him over to a pain medication that we can take home with us. He seems to be more comfortable than he was the last 24 hours, so it makes me feel like it's under control now.

All in all, I am feeling much more confident about his progress since I returned this afternoon. We may need to be here a little longer, just so we can make sure he is all good. He better hurry up, though...We put Grandma back on a plane tomorrow.

Travis is going to be doing the overnight shift tonight, so hopefully the nurses will coordinate their tasks a little bit better and not interrupt them so much. It's going to be killer to get this poor kid back on any kind of schedule once we get home. But! What a problem to be worrying about after the last few weeks. This I can handle.

Day 21

When I arrived for rounds on Tuesday morning, I was just catching the doctors as they were leaving the room. I'd been stuck in traffic and missed most of what they said, but I got the highlights from the charge nurse and then got filled in by our regular nurse later. Basically, they were really pleased with the progress he'd made over night and were feeling comfortable enough to send him up to the Progressive floor. They removed the rest of his IVs and had to start another one in his scalp (poor kid looks like a unicorn, but it doesn't seem to bother him at all). He is continuing to need oxygen support, but only a small amount through his nasal tube. His pain was fairly well under control and could monitored on the Progressive floor. His little tummy was huge and full of air, and you could tell it was making him vastly uncomfortable. Overnight they tried to suction out some of it without much success. They gave him a suppository in hopes that it would alleviate some of the pressure. It's not a huge deal medically, but it has been making him fussy.

We spent our last few hours in the ICU packing up and waiting for a new crib. He accumulated a lot of stuff over the last 3 weeks!

Around noon, we were taken upstairs to the new room. It's much bigger than our ICU room, with an in suite bathroom and a couch that converts into a bed-like bench. The nurse came to get him all settled in, took his vitals, hooked him up to the new monitors, and then...well, she shut the door and walked away. It has been 3 weeks since I've been in a room alone with my baby, without someone else peering in. It was exhilarating and frightening all at the same time.

Because the level of care that he needs from the medical staff is drastically lessened now, the level of care that we have to provide as parents is drastically increased. No more going home to get 6 or 7 hours of sleep before heading back down here. We are on the clock 24/7 now. It has been a pretty abrupt reminder of what life is like with a 3 month old. However, at least once we get him home, no one will knocking on the door wanting to mess with my baby every hour or so despite the fact that he is peacefully sleeping.

After Samuel had been settled into the new room for a while, we let big brother Luke come down for his first visit. He wasn't able to see Sam while he was in the ICU, so it had been almost 3 weeks since he'd seen him. I wasn't sure what Luke's reaction would be, but I couldn't have imagined anything better than what it was. He charged into the room, excited at first at seeing me. When I picked him up and showed him it was Samuel in the bed, he gasped! He tried to dive head first into bed with him and almost made it. Travis came to hold him because I just wasn't strong enough to restrain our little wrestler. With his dad holding him, he leaned down and grabbed Sam's pacifier. I just knew he was going to try to put it in his own mouth, but much to my surprise, he leaned over and popped it right into Samuel's mouth like he'd been doing it all along (Samuel hadn't been able to use a pacifier prior to the surgery).

I don't think I have the words to express how wonderful it was to have my little family all together again...even if we were still in a hospital room. It was a good moment.

Samuel wasn't very comfortable for most of the afternoon/evening. He's been sleeping a lot, but not happy when he is awake. We are still figuring out what regime of pain medication he needs, so it takes a little bit to get him settled again. He has not been eating well since yesterday...only an ounce or two, here and there. His little tummy looks painful, being so full of air. I wouldn't be hungry either if I had all that going on.

I think the doctors hoped he would be able to go home on Wednesday, but it's not looking likely. He just isn't comfortable enough, yet. I can't wait to have him home...but I want to make sure he's really ready for that big step. Soon. Very soon, I hope.

November 1, 2011

Moving Day!

Samuel is doing so well that we are moving up to the Progressive floor!