No Feeding Tube, Take 2

Posted on 26th December 2011 in NICU, Week 7

I can’t believe I forgot this.   For some reason that will always be unknown to men, deciding on the “going home outfit” is quite possibly the most important decision in the world.  Like I mentioned when Cameron went home, his going home outfit was from my mom.  Again, most important thing in the world.

Slightly less important is the first outfit worn at home.  The day after Cameron came home, Tanya shooed me away for a few minutes while she was changing his diaper.  I knew something was up because I’m almost always given the chance (aka “volunteered”) to change his diaper.  When I was finally allowed back in to see Cameron, he greeted me in this outfit.  Awesome…

Over the past few days, Cameron and I have really gotten to know each other.  Staying at home to take care of him has actually given me a little bit of free time to dust off a new video game I’m slowly developing.  Put another way, we’ve both been hanging out in our pajamas a lot.  Here are a couple shots from our video game work…

Here’s his Yoda pose…

Today he and I got to hang out some more.  I can’t put into words how amazing it is.  I’ve asked a couple people when the “holy crap, I’m a dad” feeling wears off.  I was happy to learn that it doesn’t.  I can’t wait to get to spend some more quality time with Sophia.  Until then, it’s time to hang out in the man cave…

The NICU chief doctor called today and gave us an update on Sophia.  She’s doing really well.  She took a bottle at all of her feedings last night and is downing enough that they took out her feeding tube again.  Sophia’s happy about it…

Sophia did have a desat during her 5:30 bottle feeding tonight where she needed some stimulation to get out of it.  So, she’s not out of the woods yet.  Every desat buys her at least another 2 days in the hospital.  It’s great to see that she went a day without having one.  Hopefully that means she’ll soon go 2 days without having one, then more.

Sophia’s had a feeding tube in for so long that it looks like she was bruised by it.  You can see the line across her right cheek in this photo.  Makes me sad…

While it’s man-time at home, it’s 100% girl power at the NICU.  Here are my two gorgeous ladies…

 

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All Thumbs

Posted on 25th December 2011 in NICU, Week 7

It’s been a busy few days.  I’m at home with Cameron 24/7.  Tanya is at home except for when she’s at the hospital taking care of Sophia.  Cameron & I hang out in our pajamas all the time.  It’s pretty awesome.

Cameron’s doing great and is actually sleeping quite well.  Maybe a little too well.  His 3 hour sleep cycle is usually like clockwork, but about once a day he doesn’t want to wake up to eat.  On those times, it takes some serious motivation (including giving him his nasty-flavored multivitamin fluid), but he eventually eats.

Sophia is still having a desat or two each day.  So, we don’t know when she’s coming home.  Her problems are only when she’s bottle feeding.  Her blood counts are looking better each day, so that’s good news.  I’m going to go out on a limb and say she won’t be home by Christmas though.

So just now, Tanya was nursing Cameron.  They took a break for a few seconds and Cameron moved his thumb straight into his mouth and started sucking it.  First time.

Just before then, I learned that if you don’t make his diaper tight, things leak out.  Thankfully I learned that lesson the easier of two ways.

Tanya and I decided to start a new tradition.  The plan is each year the twins will get their own tree to decorate.  We started this off with a 2 foot tall Noble Fir.  The twins didn’t feel like decorating it this year, but here are a couple photos of it…

Merry Christmas!

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Cameron’s Home

Posted on 22nd December 2011 in NICU, Week 7

Tanya spent a lot of time this morning on the phone with the doctors and nurses.  When we went to sleep last night, we were pretty convinced that Sophia was going to get a blood transfusion today.  They did some more tests today that showed her red blood cell count was on the rise and was now in the acceptable range.  It was still on the low side, but it was enough that they didn’t want to do a transfusion.  As routine as transfusions are, we still weren’t thrilled at the idea.  We’re glad she didn’t need one.

Sophia still had issues with more of her feedings last night.  The extra “at least 72 hours” that Sophia earned with her first desat episode is actually going to be more like a week.  We won’t know for sure when Sophia is coming home until much closer to when it actually happens.

Meanwhile, Sophia won the cute parade today in the NICU.  She was sporting head to toe pink cuteness…

It’s sad to see her feeding tube back in.  It’s a simple thing, but it still makes us feel like we’re so far away from taking her home…

She was more alert today, however.  She was really enjoying her binky.  I had to run out to the military personnel and insurance offices to iron out some paperwork errors for the kids.  That trip cost me most of the afternoon with the twins.  While I was away, Sophia got “assessed” by one of the occupational therapists.  From the way it sounds, it was every bit as much of an assessment of Tanya.  Sophia breast fed perfectly.  I guess she does well under pressure.  This is not a picture of her breast feeding…

Before we left for the day, I was able to spend some quality time with Sophia.  Because of her desat issues while feeding, Sophia took a break after she fed with Tanya and got her next feeding through the tube.  I didn’t get passed out on or barfed on!

Tanya spent some great time bonding with Sophia too.  Sophia acted like she didn’t understand why there wasn’t a breast involved in this feeding…

In case you missed yesterday’s news, Cameron got to go home today!  Since Sophia didn’t get to go home, most of the photos from today are of Cameron.  Sophia will get her turn soon enough.  The car seats we bought were specifically designed to handle preemies, but Cameron still looked tiny in it…

Here’s Cameron’s old crib.  Empty!

Here’s his monitor.  Disconnected and off!

Cameron was a sport about his car seat.  He was a little fussy about it, but put up with me learning how to strap him in…

I strapped him in then checked to make sure everything was snug.  Cameron’s 5 lbs 2 oz today.  I’m glad he wasn’t any smaller…

Take me home!!!

Seriously!?  The straps are as big as he is.  He’s now about 2 lbs heavier than when he was born – that’s about 66% bigger.  I can’t imagine what he’d look like in the car seat back then…

To make sure he was comfy and safe, we removed his little strap pads.  I could get him a snugger fit without them…

Before we left, I said goodbye to Sophia.  I did that by taking some more pictures of her…

She woke up enough to blink at me a few times.  See you soon, little girl.

It was in the 40′s and windy outside, so we added an extra layer over Cameron to keep him warm.

It was terrible to leave Sophia at the hospital.  It felt like we were abandoning her.  Before we left, Tanya took a few minutes to give Sophia some love…

Here we are ready to leave the NICU with Cameron!

You will not believe this.  To leave the hospital, Tanya wasn’t allowed to walk and I wasn’t allowed to carry Cameron.  Tanya had to sit in a wheel chair and hold Cameron’s car seat.  Really?  This is the doing of evil lawyers…

Here we are escaping with Cameron out the front door…

We packed Cameron away in the back seat (well, we really just clicked his car seat in place) and posed for one last picture leaving the hospital…

It was  a 45 minute car ride home.  Cameron was pretty uneasy for about the first 15 minutes of it.  After that, he did pretty well.  I definitely don’t recommend giving your preemie his first car ride at night.  He was tough to see and he didn’t like us turning the light on to look at him.

Once we got home, Tanya did the honors of bringing Cameron inside.  Here’s his first few seconds in our home…

Tanya quickly found her way to the cuddle couch and lit the fire.  They were cozy and warm…

The cats were a little baffled at the new addition to the family.  The sniffed and looked confused.  Then they posed for this photo…

One slightly scary thing is that Tia, the cat on the right in the photo above, weighs more than 3 times what Cameron weighs.  Cameron’s working on that though.

Our cat Tobie stopped by to sniff Cameron a few times.  Cameron makes some funny little noises that Tobie didn’t understand.  I’m sure he’ll learn…

Here’s Cameron’s “going home outfit” from grandma…

It amazing not having to deal with wires to hold your kid.  He’s like…a kid!

After the couch cuddle time, Cameron got a bath.  He ate some dinner and racked out.  What a day!

His new bed is much less evil-hospital-like.  It might even be comfy…

It’s awesome to be home with Cameron.  Our joy is tempered a bit because Sophia is still fighting to get out of the hospital.  For now, we’re on a “split ops” schedule.  I’m going to stay at home and take care of Cameron while Tanya jets back & forth to the hospital to finish teaching Sophia the things she needs to come home. We’re definitely looking forward to having them both at home.

Since we’ve been home, we’ve learned that Cameron is more afraid of the dark than he is of a quiet room.  Neither are very comforting to him right now.  I’m sitting in the twins’ nursery writing this while Tanya gets some rest.  When I’m here (making noise?), Cameron sleeps really well.  We’re going to ween him off noisy bright rooms as soon as we can, but I’m guessing Sophia will have to work through that too.

In the morning, I’m turning over the keys of our airplane to its new owner.  I’m really sad to see it go.  That plane let us travel all over the country (including a trip to see a friend pilot the Space Shuttle on his first mission to space) and enabled lots of extremely short notice trips to see Tanya’s mom when she was battling cancer.  With the twins, the plane doesn’t fit our family any more.  Besides the dual-college fund, I’m going to start saving pennies for our next plane…someday…

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Almost There and So Far Away

Posted on 21st December 2011 in NICU, Week 7

It’s hard for me to believe, but I just added a “Week 7″ category. So, today marks 6 weeks since the twins were born. If you’ve followed along, you know that it’s been a roller coaster. It’s not over yet.

Before I get into that, I missed a couple photos from yesterday that are worth sharing. Here’s a couple from when I was feeding Cameron in the middle of the night. I was much more tired than he was…

Yesterday, Sophia was doing well with eating and even got her feeding tube removed. Here’s her tube-free cuteness…

Yesterday, Sophia was taking a while to get started at each feeding. Once she got going, she didn’t have any problems. That changed last night. Sophia wasn’t cooperating very well with three of her feedings last night. During each of her feedings, Sophia had fairly big desats (desaturation – a drop in blood oxygen saturation – that’s bad). It was alarming enough to the nurse and doctor that they put a feeding tube back in Sophia.

The doctor called us at 7:00 this morning and told us the news. He said with that episode, Sophia bought at least another 72 hours in the hospital. Tanya and I talked a lot about it. We felt like if we were there, it wouldn’t have happened.

Of course, we were wrong (and I feel stupid for even thinking that). We got to the hospital soon after that. We didn’t make the 8:00 am feeding, but we were there for their 11:00 one.

Cameron had an eye appointment this morning. We weren’t around for it, but it sounds like eye exams are pretty taxing on little kids. Their eyes are still premature, so they look for things like blood vessels properly growing from the back of the eye towards the front (apparently preemies’ eyes aren’t “fully powered” for quite a while). Cameron’s eye appointment went well, but after all that work, the doctor wanted to keep him until tomorrow. So, the great news is Cameron’s going home tomorrow!

At the 11:00 feeding this morning, Cameron (still pretty out of it from his eye appointment) wasn’t that interested in breast feeding. We were pretty concerned about it, but, after a little coaching, he did OK with a bottle. He did about the same at his next meal. We both felt bad and were worried about it changing his release date, but the nurses were actually very pleased with how well he was doing after his eye exam. Cameron was certainly doing tons better than the other kid in room who had an eye exam today. That kid was throwing up every time anyone even mentioned food. Did I mention that Cameron’s on track to go home tomorrow!?!

Cameron’s happy about that (or maybe sleepy about that)…

Sophia’s our roller coaster today. She did really well at her 11:00 breast feeding this morning. Whenever she’s cuddling with either of us, she does extremely well…

However, at her 2:00 feeding this afternoon, she showed us that she’s not ready to go home. She was eating fairly slowly, like she normally does. Nothing out of the norm.

After I gave her a break just to make sure she was OK, she continued on through about half of her bottle. She was laying in my arms feeding normally, then her arms suddenly fell to her side, her head leaned back, she lots all suction on the bottle, and her monitor started wailing. The nurse instantly sprung into action. I didn’t get an official medical opinion on it, but it looked and felt like Sophia passed out in my arms. She was completely limp. She lost all the color in her face – she was extremely pale.

I sat her up and tapped her bottom and back. (“Tapped” is something more than a gentle pat and something less than a Mike Tyson punch.) Don’t take this as medical advice, but preemies respond to touch pretty well as a “hey silly, don’t forget to breathe” message. It took what seemed like forever for her heart rate and breathing to pick back up (I have no idea how long it actually was). Her heart and breathing never stopped, but both dipped alarmingly. Her oxygen saturation level read as low as 50% when it’s normally in the 95-100% range. I’m sure I was ghost white too.

Seeing her breathing ramp back up, then heart rate, then oxygen saturation was a relief I can’t describe. I have never been happier to have Sophia hooked up to a monitor than I was then. Tanya and I just took an infant CPR class this morning. I was glad that I didn’t have to use it (not that they would have let me). She slowly became alert again with a look something like “what are you guys all worried about?” Nothing baby, just relax…

The doctor’s orders were to keep feeding Sophia to try to establish how bad the problem was. Sophia’s night nurse tried to feed her at 8:00 tonight, but within a few minutes Sophia desat’ed again. Sophia had some blood work done and her red blood cell count is on the low side. The doctors are going to talk in the morning about where to go from here. It’s possible that Sophia will get a blood transfusion tomorrow to boost her red blood cell count (which will help her oxygen levels). Besides that, I’m not sure what’s in store for her.

It’s definitely been an emotion filled day. It’s wonderful beyond words that Cameron is going home tomorrow. At the same time, I’ve never been more afraid for someone’s life…and I’ve been shot at in the middle of a war.

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