Clark Canyon Tour '09

This last weekend (Thurs-Sun) we took our first family vacation. Actually, we've taken lots of trips, but this was the first "pure vacation" that was just us with our kids, going somewhere on our own, NOT to visit relatives or attend a family reunion. As much as we love each of our families, it was great to have our own little family time...

A few days before the kids started Spring Break, I politely asked (begged) Chris to take a couple days off to help me maintain my sanity. I thought we might take a day trip or two. Which turned into an overnight trip to Southern Utah. Which turned into a bit more... There is just so much we haven't seen out here, and it felt like a shame to be all the way down there and miss any of it. As our plans got more ambitious, the kids got more excited, but we just got more and more nervous.

Luckily, our fears were unfounded, and the trip was amazing...

(click on any photo to enlarge it)

THE ROUTE
THE TRANSPORTATION
THE PROOF
...But first, some quick notes

• Although it was sunny, the weather at most of our stops was cold, windy, and snowy. This accounts for the lack of more/better pictures. (And our messy hair)
• Yes, David's head has been shaved. No I did not approve. Yes, it was Chris. No, I don't want to talk about it.
  

Arches
Four Corners
Grand Canyon
Zion National Park

(Michael got a quick lesson about keeping gum in his mouth (and out of his hair)

Swimming (indoor pool, outdoor snow)
Bryce Canyon
THE TRAVELERS

Chris drove the entire 1640 miles.

Nancy spent the entire 1640 miles getting in and out of her seat--passing out food, fetching sippy cups, replacing pacifiers...

Tommy ranked the top-five activities of the trip as follows: 1)Swimming, 2) Four Corners, 3)Staying in Hotels, 4)Grand Canyon, 5)Arches.

Michael asked at one point, "why do we keep seeing so many canyons!?" He spent most of the trip asking us what state we were in.

David spent a lot of time in the van singing the alphabet. He loved the climbing and hiking. He was also a fan of the make-shift beds we made him at each hotel room, since he is still used to sleeping in a crib.

Robbie was an amazing traveler. He ate and slept at all the right times, and was very patient about all the time he had to spend in a carseat. It was a perfect trip for him, since we were mostly on the road and very rarely in public/crowded places. (Just a few more weeks until RSV season is over and he can be out and about!)

THE TIDBITS

• Getting an $80 Annual National Park Pass is worth it.
  
• We loved having baskets/bins on the floor of the van to keep all of our stuff organized (for the first few hours of each day, at least)
• We planned our trip so that we'd be able to listen to most of General Conference (LDS broadcast) while we drove--nothing like having your kids strapped in chairs to help with being able to pay attention!
  
• Regardless of how little food your children will actually eat, it is never, ever a good idea to buy 2 Happy Meals to split between 3 children. (Three days of arguing over the 2 toys...)
• Our most notable driving experiences were 1)driving through a (red) dust-storm, and 2)being completely stopped on a 2-lane highway for 1.5 hours due to a car accident. We didn't see as many animals as we hoped to, but at least we didn't have any problems with the deer-, cow-, horse-, sheep-, or rabbit-crossings that the signs warned us about.
  
• An in-car/portable DVD player is not a luxury, it is an absolute necessity. How did we (that is, our parents) ever survive without one?!
• Apparently, Curious George (the movie) is capable of entertaining boys with ages ranging from 2-7--even after being viewed 7 times. And incidentally, Cinderella is "just for girls", but Barbie Mermaidia is not.
  
• We got much better deals on hotels by driving into town and finding one (as opposed to the quotes we saw online before our trip). This was a better option financially, and it helped us be more flexible when we wanted to drive further on certain nights.
• Our most "economical" stay was at the Hacienda hotel/casino in Lake Mead, NV ($20 a night for a really nice room with 2 double beds!). Our favorite hotel was The Abbey Inn in Cedar City (great indoor pool).
  
• The presence of a waffle iron is the leading indicator of the high quality you can expect from a hotel's continental breakfast.

The kids are already asking when we are going on a trip again. And I just overheard Michael ask Tommy, "What state are we in?"

Robbie Report: Yes, We're Here... and Better than Expected!

November 13, 2008: Discharged from the hospital

February 2009: Thriving

We are all alive. Robbie has now been home for as long as he was in the hospital. He is doing amazingly well. That's the short version of the story. Here are the details...

Coming Home
Robbie's last few weeks in the hospital were incredibly hard on me. Of course the whole time he was there was difficult, but that last stretch was just a killer.

One of our last days in the hospital.

Feeding
As I explained before, the main struggle was trying to teach him how to eat. I had breastfed my other boys, but it was just what had worked for us--I never had any extreme determination about it. When Robbie was born, though, something just kicked in; I was very driven to give him the opportunity to nurse, to the point of becoming quite stubborn about it. When Robbie drank from a bottle for the first time (1-2 weeks before leaving the hospital), I just sat and cried. I know the doctors and nurses thought I was insane; it should have been exciting that he was even capable of sucking and swallowing, and by this point I had been attempting to breastfeed twice a day for almost two months (unsuccessful attempts are exhausting, believe me). Normally, I'm the type of person that would have said, "hallelujah, he finally took the bottle, now I can quit all this nonsense," but again, I just couldn't let it go... I started staying nights in the recliner by his bedside, I tried every method under the sun to help him learn to latch on and eat; I had lactation, speech, and developmental specialists helping me--the most frustrating thing was that there was no obvious reason why Robbie wouldn't nurse.
The conclusion: Robbie became a successful bottle-feeder, and was scheduled to go home. Then, the night before we took him home--he suddenly nursed perfectly! We took him home with instructions to continue to bottle-feed, but nurse twice a day. Within a few days, it was a 50/50 combination of breast and bottle (so we could supplement his bottles with a little extra nutrition).
Here's the amazing part: Within 3 weeks, Robbie was gaining weight and thriving so well that we switched to nursing exclusively, and from then on we have only fed him bottles when it was for our own convenience. Our pediatrician said she has rarely (if ever) seen a case where a baby that premature has ended up exclusively nursing. I still constantly have moments when I look at Robbie and think, "Wow. All that effort, and work, and heartache. We did it."

Oxygen
Robbie came home on supplemental oxygen, due to his chronic lung disease, and long history of tachypnea (rapid, shallow breathing). He was getting the smallest concentration of oxygen that the machines can give, at a very scant flow. He was on oxygen from the time he came home (mid-November) until early January. We knew he was getting better, which was encouraging, so for us the oxygen-experience was just a pain. Right after the equipment was picked up and hauled away--just as soon as I finished my dance of joy--I realized I had never taken any pictures of how it all worked. Basically, there was a HUGE (4-5 foot tall) tank in the room with a long tube that connected to the tubes in his nose. We had 25- and 50-foot tubing, so we would be able to walk around with him. But here's the catch: while he was on oxygen, we also had to monitor him to make sure he was getting enough. For this, we had a little sticker-probe attached to his foot, connected to a pulse-oximeter, which would beep anytime that his oxygenation levels went down. Unfortunately, the wire connecting the foot probe to the monitor was only about 3 feet long, so anytime we wanted to carry the baby anywhere, we had to carry the monitor with us. It had a shoulder-strap, but it was heavy and awkward... basically, for those first couple months we tried not to move Robbie around much more than necessary. And the beeping! We would hear it in our sleep (sometimes for real, sometimes not). Thank goodness that's all over with!

(I managed to find one picture of the oxygen monitor)

The best part about getting Robbie off the oxygen was seeing what his face looked like without tubes in his nose!

Development
Robbie is now 6 months old. Because his due date was in early November, his "adjusted age" is 3 months old. Basically, the time he spent in the hospital was just a time for him to do the growing and developing he would have done in utero. When we brought him home, it was just like bringing a newborn home; he has now developed as much as another 3-month-old would have.He is now 12 and half pounds--not even on the charts for his actual age, but right in the 50th percentile for a 3-month-old baby (that's even higher than his brothers landed on the charts!) His development up to this point has been completely normal... he looks at us, smiles, coos, stares at his brothers, laughs, poops through all of his outfits, spits all over our outfits...

When he first came home, we took Robbie to the doctor once or twice a week, then weekly, then once every other week, to make sure he was growing and developing well. We're now down to monthly visits (where he gets his RSV shots). We've also been keeping an eye on his blood pressure. It got high right before he came home, and he's been on medication, but it seems to have gotten better.

Basically, our pediatrician is looking at him as being completely well. As far as his brain-bleed goes, we have not seen any obvious effects from it so far. Of course there are still things that could come up, and he will be monitored closely in the coming years. Next week, as part of a special Neonatal follow-up program, Robbie has an all-day check-up; he'll be seen and evaluated by all sorts of specialists (speech, hearing, vision, neurology, etc.). He will continue with these sorts of appointments every 6 months or so for the next few years.

Cooped Up
Despite the fact that he is doing so well, Robbie is still at risk for lung problems. Since it is RSV season, we have to be really careful about exposing him to germs--contact with a common cold could land him back in the hospital. We have been really strict about it--he only ever leaves to go to the doctor's office--no errands, no outings, no church (Chris and I take turns). We can't have children (other than our own) in our home, and we have to screen the adults that come over ("Have you been sick?" "Have you been around sick people?" "Would you mind washing your hands again?"). It gets tedious, but it is worth it. Despite the fact that Chris, the boys, and I have had our share of colds and coughs, Robbie is holding up great. The most we've noticed is a little congestion, but nothing that has made it to his lungs. It's a good thing that he's ok, because we are going bananas! Cabin fever is more than just a term to me now; it is my life. I can't really complain though... I have great friends who take turns picking up Tommy and Michael from school; as always, Chris is terrific about taking the older boys out as often as he can; and really, I'm just being forced to take it easy--which I definitely needed. The first month or two after Robbie came home, I felt like I was just recovering from the whole ordeal. Now I'm just counting down the days until spring. I can't wait to be out and about! (In the meantime, I need to figure out how to attach some gym mats to my walls, because the boys are literally bouncing off of them...)

Blessed
These three guys have been absolutely amazing.

They handled the hospital experience very well--flexible with changing schedules, willing to have us be with Robbie, so good for their babysitters. We haven't noticed an ounce of jealousy or resentment. One of them is always saying, "Robbie is so cute," or "I love Robbie," or just patting his head. They still pray for him constantly--that he will keep getting better and that he won't have to go back to the hospital.

And we know they aren't the only ones praying for us. This experience has taught us firsthand that it's not just trite when someone says, "Remember so-and-so in your prayers," or "You're in my prayers." We have literally felt all the prayers being offered in our behalf. I especially felt a tangible strength, helping me through each moment while Robbie was in the hospital; people always asked me how I was surviving it, and I know it was because of faith and prayer.

Thank you.

Homecoming

Together At Last

We brought Robbie home yesterday. He'll be on oxygen for a little while, and we'll have to keep him home all winter, but we're thrilled to have him with us!

There are more details to share, but for now they'll have to wait
... it's a bit chaotic here!

Any suggestions for stomach gas?

You might think I am talking about one of the kids, but guess what? It's just me. Just wondering if anyone has any suggestions. I have been dealing with this for years and wonder if any women out there have figured out a good solution. Thanks.

UPDATE
Note to self:  Never leave logged-in blog unattended again.
Note to Chris: Hope the couch is comfy tonight.

Robbie Report: Due Date Come and Gone

Prognosis
Parents are usually told to plan for their premature baby to be discharged from the hospital sometime around the baby's original due date. It could be a bit earlier or it could take a bit longer, depending on a myriad of factors. Robbie's due date was last Sunday, Nov 2. We were aware for the few weeks leading up to it that he most likely wouldn't be home by then, so it's disappointing, but not a shock to us that he's still at the hospital.

Latest phone-photo

(It's tiny because I'm having trouble posting it on the hospital computer; I'll try posting this in higher resolution later)

Adjusted Ages
Now that Robbie has passed his due date, he is referred to as "full-term." For the next few years, for purposes of doctor's visits and developmental evalution, we will refer to his actual age (now 2.5 months) and his adjusted age (now 3 days). His behavior, growth, and developmental milestones will match up more with his adjusted age than his actual age. This means right now, he can barely hold his head up, makes eye contact with us briefly--but does not hold it, and is not even close to smiling at us, as most 2-month-olds would be.

Progress
The good news is that he is getting closer to coming home. The fact that he was on a ventillator, has had persistent lung problems, and has required supplemental oxygen for such a long time confirms that he has Bronchopulmonary Dysplasia--aka "Chronic Lung Disease." It is typical for premature babies to have lung problems, and they are always at risk for future lung issues like Asthma or Bronchiolitis (caused by the RSV virus); he now fits into an even higher category of risk for these problems (to try to protect his lungs, even when he does get home, we will not be taking him anywhere until Spring). One of his main lung symptoms--tachypnea (fast, labored breathing) has finally significantly improved, and he is now receiving only a scant amount of oxygen through his nasal cannula--a low enough setting that he can go home on it. At this point, feeding is the only major thing keeping him in the hospital. As soon as he can take all of his feedings by mouth, and continue to gain weight for a few days in a row, he'll be ready to come home. Teaching him to eat is turning out to be a long, drawn-out, and exhausting process.

BreastFeeding
Robbie is fed every three hours--day and night--through a feeding tube. For the last month or so, for two of those feedings--one during the day, and one in the night--we have tried breastfeeding. These attempts have typically been unsuccessful because of his lung problems and rapid breathing. Now that his breathing is under control, and he is older (technically a "full-term" baby now), he has more stamina, so we don't have to limit ourselves to trying twice per day. Thanks to a lot of help from friends and family, I am now at the hospital all day every day, so that he can at least attempt breastfeeding at each feeding time. During the last week and a half, he's had about 6-7 successful breastfeeds, but lots more frustrating, unsucessful attempts followed by tube-feeds. We're very encouraged by the fact that he is indeed capable of breastfeeding; he just has a few issues with the proper latching and sucking technique, and we will just keep working at it--with the help of the nurses, lactation experts, occupational therapists, physical therapists, speech therapists, etc. It's quite an exhausting process, but I am determined to have him breastfeed; there are so many potential problems he may have in the upcoming months and years, that we want to provide him with every possible advantage we can.

Bottle-Feeding
A few days ago, Robbie learned to take a bottle, which he now gets once a night. It is important for him to aquire and practice this skill so he won't lose it, but we are hesitant to offer the bottle more often, because we don't want it to impede his breastfeeding progress. Eating from a bottle is easier than breastfeeding--that is to say, it's easier for a baby to "cheat" and get milk without using the proper latching, sucking, and swallowing techniques. I want to make sure that he perfects these techniques not only so he can breastfeed, but so his development can progress optimally (because Robbie had a brain bleed, we have to be very focused on every aspect of his development and motor skills, and that includes sucking and swallowing).

Future Feeding
Even when breastfeeding is established and he comes home, he will have bottles on a regular basis, because for a while he will need supplemental nutrition (his bottles will be made from my breastmilk, fortified with formula concentrate for extra calories). This means there will definitely be some mixture of breastfeeding, pumping, and bottle-feeding going on at home. Keeping the bottle-feeding to a minimum will also keep the pumping to a minimum, which in turn will help me maintain my sanity. (Just imagine... breastfeeding, bottle-feeding, pumping, washing the pump parts, not to mention diaper changes, 3 other kids, etc.)


Keeping at It
This last stage of the hospitalization is demanding and exhausting. As unbelievable as this may sound, I didn't realize until late Monday night that election day was the next morning--so that just confirms that I am officially out of it. We continue to be grateful for all of the love, support, and prayers on our behalf; we truly feel the strength that comes from it, and we really need it!

Halloween 2008

Happy Halloween from the Four Clark Boys!

pssst... Check out previous years' Halloween costumes, including the older boys in the same puppy costume, here and here.

2 Month Mark!

Last night we "celebrated" Robbie's 2 month birthday. We got permission to have both older boys with us at the bedside (usually we are limited to 3 total visitors). It was Tommy and Michael's last time to see Robbie in the NICU, since RSV season is upon us, and any day now children under 12 will no longer be admitted into the NICU.

We brought along pictures of the boys and lots of cards, so Robbie won't miss them too much.

We had a great visit with Robbie. Tommy helped take his temperature, Michael helped clean out his mouth, and they both enjoyed watching him get weighed.
(David was sad to miss out on the fun, but happily made lots of cards and sent Robbie a hug and a kiss when we left the house.)

Believe it or not, Robbie is now 6 lbs 5 oz! At the rate he is going, he will go home bigger than the birth weights of Tommy (5 lbs 10 oz) and Michael (6 lbs 7 oz). It may be tougher to pass up David's (8 lbs 2 oz).

Speaking of Robbie coming home, we have no idea when that will be. Unfortunately he continues to have lung problems (fast, labored breathing) and he still hasn't figured out how to eat by mouth. The schedule and the stress are definitely wearing on us, but luckily he's cute enough to convince us to keep being patient with him.