Daddy's Favorite

Owen's favorite thing is Cars (the Pixar movie). When we leave his school, I ask who's at home, and he says, "Mommy, Sophie... and my cars." So when he gets home, he goes to Joanne, but then it's generally Cars time.

I believe the biggest cause of his Cars fixation was my purchase of Meet the Cars, which got him familiar with all the characters. Oddly, it does not have DJ, Boost, Wingo, and Snotrod, the characters instrumental in McQueen arriving in Radiator Springs in the first place. That book, which I got in April, is apparently now out of print and Amazon has 3rd party sellers selling it for $40+. I almost feel obligated to get a second backup copy for the last remaining copy under $10. This might be a data point that supports Joanne's thought that Cars is the next Star Wars of merchandising. But I digress...

I purchased a lot of 50 on Ebay earlier in the year. He got about a dozen right away, but that was more to have a set at our house and a set at my parents. Since then we've gradually given him another on random occasions. By Thanksgiving, he had most of the main characters, and those he didn't have, he used blocks of the same color in their place. But with Christmas, it was time for a boost to his collection. As a stocking stuffer, he got the already mentioned DJ, Boost, Wingo and Snotrod as stocking stuffers, and he finally got Luigi and Guido as stocking stuffers at my parents (they're smaller, so we're OK with him not having them at home since they're more likely to be a choking hazard for Sophie). Joanne's parents also got him a shake and go Dinoco Mcqueen.

He also finally got my favorite:

Did you see it? Did you see my favorite? It's at the 25 second mark. He appears for 3 seconds. He has no lines, no interaction with any of the main characters. But he's my favorite because we have "Meet the Cars".

His name is Dustin Mellows, a delivery truck, that inexplicably made into the book over DJ and friends. Even more inexplicable, he is one of 3 cars shown on the inside front cover of the book. So with that prominence in the book, Owen learned who he was and how to say his name. And if your toddler says something as cute as Lisa Simpson's third word, (sorry, couldn't find an adequate clip) well that would become your favorite too. It got to the point where I would ask Owen to do me a favor and his response would not be "what?", it would be "Dustin Mellows."

In the weeks leading up to Christmas, when we'd play with the Cars, he'd get everyone's favorite (Sally for him, Flo for Joanne (ultimate term!), Mater for my dad (fitting), Tex for my mom (her father worked with Texaco), Sheriff for Sophie (Black, white and a little red, fitting for an infant)), but would note we didn't have Dustin Mellows, so he assigned me McQueen as my second favorite. Although I knew the merchandise machine for Cars was huge, I didn't expect there to be something for Dustin. But low and behold, there was! And I happily purchased it on eBay. I initially remarked that it was the first present I purchased and it was for myself (from Owen), but then I came to my senses and realized it should be from Santa to Owen and me.

Two days before Christmas, we were playing in the driveway. He wanted to bring out his cars, and went racing inside to get them one at a time. We'd decide who's favorite would be next, then he went inside, got one car, came back outside (being sure to close the door), and put it in line with the others. When it was time for daddy's favorite, he again reminded us we didn't have Dustin Mellows, so he went inside to get McQueen for me. Little did he know what he was getting for Christmas:

Something Different

Christmas, as anticipated, was a lot of fun. We had Keith's parents and brother over for breakfast, and then we went over to my parent's house (with my brother and his family) for dinner. Owen and Sophie must have been pretty good this year, as they did pretty well in the gift department (although not too spoiled I think). Owen received games, puzzles, a train set, Winnie the Pooh figurines, and, of course, Cars merchandise (see Keith's post on that subject, forthcoming).

Besides the gifts, it was a lot of fun to see family. Keith's brother is a volunteer fire fighter in Kansas, so he brought his hat, gloves & boots for Owen to see, which he got a big kick out of. I was also happy to see how well Owen played with his cousin Ben, who is one and a half years old.

The new toys help keep Owen busy, who's favorite phrase these days is, "Mommy, I want to do something different!". Owen enjoys crafts, so I'm constantly trying to be creative with the materials we have. I now think twice before throwing anything out. I saved some of the wrapping paper from Christmas so we could cut out the pictures and glue them on construction paper. I'm trying to figure out what to do with some of the bows.

Although it's hard with crafts, I try and find activities that Owen can actively participate in. Owen is more of a watcher than a participator. He refuses to even color with crayons or markers, saying, "No! You do it!". I haven't asked his teachers about it yet, but he does come home with projects supposedly colored by him. I'm sure it's part of his shy personality, but somewhere along the way we must have trained him to do that. So now we are trying to untrain him of that, without upsetting him too much. When I ask him why he doesn't want to do something, he usually says "I can't", or the amusing "I'm too busy", which makes me laugh cause I have no idea where he gets that from.

If he's busy at anything, it's talking. Keith and I wonder if all 2-3 year olds ramble on like he does. He talks so fast and about such random things that you have to concentrate to keep up with him. But, of course, most of you will never believe me, because he is so shy in a lot of circumstances!

Sophie is doing pretty well, although we've received more confirmation that she is developmentally behind. Her developmental pediatrician said that movement wise, she is like a one month old. Which is disheartening given that she's been home for 3 months, but understandable with all that she's been through. The good news is that she is progressing in her development, smiling and laughing more and tracking things. We are making an effort to give her more tummy time and other physical activity, and she will be starting physical, occupational, and feeding therapy soon. Her nippling has not improved, so we are hoping her scheduled swallow study in a few weeks will shed some light.

Owen is done with school for the year, so tomorrow starts a four day weekend for us. We don't have any plans for New Years, which is par for the course since we've had kids. I usually try to do something special for New Year's Eve dinner, so right now I'm planning on making this a cooking weekend: soup, muffins, and since Owen gets a kick out of saying "Holy Moly, Guacamole!", guacamole. I'll try and get Owen involved when possible, which will hopefully keep him occupied for a time. Until I hear the inevitable: "Mommy, I want to do something different!". :-)

O Holy Night

One of my favorite Christmas decorations is an ornament that shows Santa kneeling before baby Jesus in the manger. For many it is a reminder to "Keep Christ in Christmas" and "Remember the Reason for the Season". For me, it also signifies that you can blend the more traditional or "commercial" sides of Christmas with the religious one. Putting up lights, decorating the tree, baking cookies, sending cards, buying gifts is all part of the big celebration of Jesus's birth. You don't have to forgo all the material aspects (although it's easy to go overboard). But, of course, if you forget the "reason for the season", all of that can feel empty.

This year we have a unique perspective on this holiday. To me our two kids signify the two "sides" of Christmas. Although we said last year was the first year Owen could really enjoy the holiday, this year is even more special for him. He is now talking, so he can voice his enjoyment of the lights, decorating, wrapping, crafts, and, of course, the opening of presents. He doesn't fully understand this Santa Claus guy, but he knows he brings gifts. (He also enjoys playing with the manger scenes and knows all of the "characters".)

To me Sophie is a reminder of the newborn baby in the manger. Sophie, like Jesus, wasn't born in perfect circumstances. I, like Mary, am left to wonder what the special beginning means for the future. At Christmas mass today the priest talked about how the birth of Christ was special, but not picture perfect or extraordinary; Joseph and Mary had to deal with problems in the ordinary course of their lives. We are called to do the same. Our daily trials and tribulations need to be handled with the same faith the Holy Family had. And that if we allow God to lead our lives, His peace can pervade our ordinary, and anything but perfect, lives as well. I need to be reminded of this often.

So on this holiest of nights, I wish you Christ's peace. Merry Christmas!

Happy 3 Month (adjusted) Birthday, Sophie!

If Sophie was born on her due date, today would be her 3 month birthday. A couple of days ago we hit the milestone of Sophie being home longer than she had been in the NICU. It's hard to imagine she's so old, yet her time in the NICU seems so long ago. She has definitely changed in the past few months, although some things have remained the same.

Sophie's nippling has not improved and she still doesn't seem to feel completely healthy. We are trying various things to try and improve her loose and frequent stools, but since it's best to only try one thing at a time, it's a slow and sometimes frustrating process. We are still going to lots of doctor appointments, but going out is getting easier (probably less of a change in Sophie, and more me adjusting). This week we had two appointments in one morning (one of which was at a feeding time), which I would have thought insane a month ago, but ended up going okay. The bad news from the appointments is that Sophie will likely need two surgeries next year: one for her umbilical hernia, and one on her kidneys. The hernia surgery should be fairly quick and easy. I need to do more research on the kidney surgery, but her urologist is pretty confident that she will need surgery around her 1 year birthday to correct her duplicated kidney and reflux. I'm not sure how major a surgery that is, but it would definitely be harder than the hernia surgery.

Visibly Sophie is very different. I have posted recent pictures here. She is now close to 13 pounds. I don't know if you can tell from the pictures, but Sophie, aka "Baldy", has lost a lot of hair. The hair loss is apparently normal, but we didn't notice it with Owen, probably because he had very little hair to start with. Developmentally she has more alert times, smiles and giggles a little bit, and has started paying attention to toys. Her therapists have confirmed that she's behind developmentally, but that is not a surprise given her prematurity and rough start to life. Looking back at pictures and videos of Owen at 3 months, she is less giggly/smiley and has less head control.

Owen, meanwhile, is really enjoying the Christmas season. He has helped trim the tree, which obviously has more decorations on the bottom half than the top half. :-) We made a gingerbread tree, watched "A Charlie Brown Christmas", learned all the characters in the manger scene, sent a letter to Santa, went to Zoo lights, and he has even helped with the Christmas cards (hopefully the mailman will still deliver the cards given the address labels/stamps are a bit crooked!). He has enjoyed receiving cards in the mail, especially ones with family pictures. He likes learning who everyone is.

Dinner time continues to be a fun time. Owen learned that putting his feet up on the table is a no-no, so now he sometimes puts his hands on the table and says "This is a yes-yes", and then puts his foot on the table and says "And this is a no-no", just to show us he knows. Owen has always been a good eater, but Keith and I continue to find pleasure in playing games with Owen to get him to eat. One game involves him closing his eyes, crossing his fingers (his own addition to the game), opening his mouth, and then guessing the food we put in his mouth. Since we made the gingerbread tree, Owen now wants to make brocolli trees, meatball trees, okra trees, etc., and then eat them.

Hope everyone is enjoying the Christmas season. We are looking forward to Sophie's 5 month (actual) birthday on the 21st, and then of course, Jesus's birthday!

From o so december 10

From o so december 10

Twinkle, Twinkle Little Sophie

One of the nurses that comes to our house (through the NICP program) brought some pamphlets on developmental milestones and things you can do to help your babies development. One of the things it mentions is to sing to your baby, and more specifically to change the words to include your babies name. The first one I came up with was "Twinkle, Twinkle Little Sophie". It doesn't exactly flow well since it messes up the rhyming, but I get a bit choked up when I sing it because "How I wonder what you are" definitely applies. I wonder a lot. I wonder what developmental issues she is going to have. I wonder if her liver is going to continue to work. I wonder how long we will continue to have feeding issues. I wonder what we should try next in our attempt to get her to feel better. With every cry I wonder, "Are you hungry? Gassy? Reflux? Tummy ache? Over stimulated? Tired? Something else?".

This has been a busy week for us. Monday we attempted to get blood drawn again (Sophie's veins are apparently so small that even the "baby expert" couldn't get any blood from her). Tuesday we saw the surgeon, who said we will need to get her hernia fixed, a minor surgery. He said there is no hurry, so we will wait a bit to see how long she might need the g-tube since they could close that up in the same surgery. Wednesday we saw Sophie's GI doctor who gave us a new list of things we could try to get her to feel better. Right now we are trying a special formula (instead of the breast milk she had been getting) to see if that helps fix her loose & frequent stools and her gas. So far it's not helping, so then we'll try something else (another formula, upping her reflux medicine, an antibiotic for the bacterial overgrowth found in her stool are some of our options). Thursday we saw the pediatrician, which was a nice visit since I made it with the nurse practitioner that we normally see for Owen and really like. Plus, besides all that I had the stress of trying to get work done and getting ready for Christmas. I am working only 20 hours a week, but I sometimes feel like I am attempting to get a full workload done.

So it was no surprise that I was sick on Friday. We were planning on taking the kids to Tucson this weekend to watch Keith play frisbee, but my body said "Enough! You rest!". I didn't do much work on Friday, and today I had help since Keith was in Tucson. Keith's Mom & Dad were gracious enough to take Owen for the weekend, and my Mom was a big help here with Sophie. I am feeling much better today, so hopefully tomorrow I will have some energy to actually get something done. Right now the Christmas tree is half up and I need to get on the ball with ordering presents. I debated not doing the big tree because it can take so much time, but I really enjoy the decorations and I want to give Owen the full Christmas experience. I have tried explaining Santa to Owen, but I'm not sure he quite understands. I'm sure come Christmas morning, he'll have a better idea about who he is. :-) The good news is that he loves his manger scene magnets, and likes talking about baby Jesus, and who his mommy & daddy are, and what the 3 wise men bring him. Although last year we said it was the first year that Owen would be able to truly enjoy Christmas, this is the first year that Owen will be able to verbally express his feelings about Christmas. There is a lot more for him to think about and try to understand. I look forward to sharing his "wonder" at the season with him.

The Early Bird

Keith recently found an article that said that successful people tend to get up early. But what if your goal is to sleep in?


Last time I wrote I mentioned Owen was having trouble sleeping and was being a fairly terrible two. Since then we've made a few changes, with some positive results.


We initiated a "no tv and no computer week". Owen got into the habit of wanting to watch youtube videos on our computers (mainly Winnie the Pooh or Cars). We were worried that Owen was having nightmares (I thought I heard him wake up and say "The Owl scared me!"), and computer time after dinner was delaying bed time. We made an effort to hide our laptops (which normally make a regular appearance at our house). For the first part of the week Owen kept asking to watch something, but we reminded him, "it's no TV and no computer week!". Toward the end of the week he slowed down his asking, and hasn't asked for it much since.

We have implemented more discipline and scheduling into our day. We make it a point to warn Owen what's coming next: "We'll read this book, then it's time to wash our hands for dinner". Then we have to stick to the plan; inevitably he'll try for another book/toy, and if we give in he knows he can negotiate with us all of the time. We've started giving him time outs, which I'm not convinced of the effectiveness of yet. Sometimes he'll choose the time out over the preferred action ("If you don't wash your hands, you'll get a time out." "I want a time out."). But I think it has worked some of the time.


We started letting Owen choose (for the most part) who put him to bed. For about a week he chose only me, so that's what we did. I think the consistency of having me there each night helped (plus alleviated some jealousy of my time with Sophie). We had been staying with Owen in his bed until he feel asleep. In order to try and break him of that I started sitting on a "special" pillow on the floor next to the bed. The first night Owen kept getting out of bed and wanted to sit in my lap; I kept placing him back in bed. We did that SIXTY-FIVE TIMES (!) the first night. The second night was sixteen times; the third night was once. We are still a long way from being able to leave the room before he falls asleep, but it's a start. It's still a struggle to get him to bed as early as we'd like, but at least he's more consistently falling asleep before 9pm, than after.


He doesn't wake up in the middle of the night as often, but still consistently gets up at 5:30am or 6am (when he was in his crib he would sleep until 7am). We're trying the rule "we can't go downstairs until the clock says 7am", but so far that isn't having much of an effect on his actual sleeping. My newest theories are that he wakes up having to pee or wakes up cold. He has a favorite blankie, but it's fairly light and small. If he's awake he refuses to wear any other blanket. Not sure what we'll try next. We've thought about putting a gate on his door, but we're not really convinced that would do anything. I think this may just be a phase we have to live through.


His day time attitude still has some rough patches, but he definitely has shown some improvement. It's really quite bizarre sometimes - he just gets really upset all of a sudden for no good reason (at least not apparent to us). Last night we were coloring with markers, and anything I tried to draw made him cry as if we were taking away his favorite toy. Then he calmed down and we had no more trouble the rest of the night. But these upset times seem to be diminishing from the 3-4 times daily occurence they once were.


Sophie started a new medicine for reflux, which has shown some improvement in her overall demeanor and with her nippling, albeit spotty. She is more consistently nippling 50cc's, with an occasional 90. But also an occasional zero. We will be working with a feeding specialist in the next few weeks. Her gas seems to have gotten worse, so the next grocery trip will include soy milk and yogurt for me. A non-dairy diet helped alleviate the gas for Owen as a baby, so we'll see if that helps Sophie.


I started back to work this week, part time (about 20 hours/week). On days when we have doctor appointments it's difficult to get enough work done, but on days when we have nothing and I have help from the grandmas it's nice to do something more "normal". Although it's more difficult to catch up with sleep with naps.


Postscript: Owen was asleep by 8:30pm last night, and slept until 7am this morning (except for waking up at 1am). I call that success!

I'm No Superman

First, I'm overdue in thanking everyone for your thoughts and prayers. I'm constantly hearing about new people that are reading the blog, which is humbling - nurses, co-workers, friends, relatives, friends of relatives, and even relatives of friends. Although a few of you have said that I'm a really good writer, which makes me think you're accidentally reading the wrong blog. :-)

As I mentioned before, I have turned to the tv to alleviate some of the stress (and boredom) that comes with taking care of Sophie. Right now I'm watching season 2 of Scrubs. My apologies to those of you (Hi Mom!) that hate getting the theme song stuck in your head, but that's what I've had to deal with the last couple of weeks (that and Winnie the Pooh). If you aren't familiar with it, the chorus goes "I can't do this all on my own...no I'm no...I'm no superman". This has rung especially true for me lately. The support of my friends and family has never been so important to me as it is right now. Whether it be grandparents watching Owen, lunch with a friend, or just someone holding Sophie so I can do other things, life would be so much more tough without them.

I could also change the words to "I can't do this without sleep". My attitude suffers greatly when I don't get enough sleep. I get frustrated and emotional a lot easier when I'm tired. As with any new parents, getting sleep is a struggle for us. Between Sophie waking up with reflux or to poop (she gets a continuous drip feed at night so at least we don't have to worry about that) and Owen getting up in the middle of the night, we don't get a lot of continuous (or total) sleep. Owen will not go to sleep without one of us there with him, and gets up either in the middle of the night or really early the next day.

Owen is also a handful during the day. He throws a mini tantrum any time we say "no", and it takes a ton of energy to get him to do things like wash his hands, brush his teeth, take a bath, or change his clothes. As I write this he is throwing a MAJOR fit because Daddy is putting him to bed instead of me. He's been screaming for 5 minutes and is still going. [Postscript: I ended up going upstairs and putting him to sleep because he would just not calm down. Right thing to do? Maybe not, but he was going to hurt himself if he continued. Once he calmed down I explained to him that some nights Mommy is going to put him to bed, sometimes Daddy. Doesn't mean I don't love him when Daddy puts him to bed, but we like to take turns and share. He said, "oh". I told him that tonight I would put him to sleep but tomorrow night Daddy would. He said that would be ok. We'll see what he does tomorrow night.] Yesterday he wanted a lollipop, and since he had just peed on the potty I was going to give him one as a treat. But he refused to wash his hands, so I told him no lollipop unless he washed his hands. I could tell he was thinking about it, but he never did wash his hands. I never thought that he would be such a terrible two. Obviously the stress of Sophie being at home is getting to him. At least he's a good eater - along with the green beans, he continues to eat healthier than a lot of adults: pinto beans, edamame, okra, and even collard greens.

Unfortunately there has been no progress on the feeding front for Sophie. She is consistenly taking only 30-40% of her feeds from the bottle. We are hoping to work with a speech therapist that specializes in feeding issues, and are currently working with her other doctors to make sure she feels her best. This is, of course, frustrating for us, most of all because we don't know what the future holds. A trip to the P.O.P.S.I.C.L.E. website for feeding issues makes me both depressed (knowing what issues some people have) and hopeful (that Sophie is not as bad off as others).

She still cries a decent amount, but Sophie is continuing to get bigger and is starting to get out of the newborn phase. When people see her for the first time they often say, "Oh, how small!". But to me she is huge - she is now double her birth weight (10 lbs). She has more alert periods and keeps her gaze on us often. I can tell she is on the verge of smiling at us and making goo-goo noises.

Despite all of the frustrations we are slowly getting into a routine and do occasionally have some fun. This was the first Halloween that Owen went trick or treating, so we had a lot of fun this past weekend. Saturday morning was the NICU's annual reunion. It was nice to see a lot of Sophie's nurses, albeit a little weird to go back to the place that was the location of so much emotion for us. We went to Tempe's Halloween festival on Saturday night. Owen got to go in a fire truck and jump in the bouncy tent, where he had a lot of fun in his own reserved kind of way (the other kids in the tent were jumping all over the place, while Owen bounced in one spot). He was an alien at the festival since we didn't really have time to go look for a costume. He had asked to be an elephant, which I thought would be impossible to do last minute. I was hoping to get a pumpkin at the last minute, but alas, no. Imagine my surprise when we happened to see a toddler elephant costume 50% off at Albertson's the morning of Halloween! Owen himself really surprised me by absolutely loving trick or treating. After every house he would say "Let's go to another house". He even asked to go in our neighbor's haunted house! I guess the dark and/or the costume helped him overcome his shyness.

Please continue to pray for us as we learn to navigate life with two kids who demand a lot of our attention. There are times that we definitely need all the (divine and earthly) help we can get!

Here are some recent pictures. More are on our Picasa websites here and here.

From o so october 10

Halloween. Sophie had an elephant on her shirt too. You can see her feeding pump in the background.

From o so october 10

From o so november 10

You can barely see Sophie's scar from the liver surgery, but her G-tube is pretty obvious.

Green beans!

About two weeks ago now, Owen gobbled down some green beans. And then he had some more. I facebooked that he set a world record, but we could only estimate the number that he ate. A couple of days later, I made sure to count. We guessed he ate 24 in the previous attempt, so I laid out 25 for him on a plate. After having some of his other dinner, he got to work.

He wasn't that interested at first, but green beans are one of the foods that we have a "fun" way to eat--a typewriter style of chomps. Owen doesn't quite have the direction right--I do it from the side so he can see it go into my mouth, but he goes straight in. But once he got started, he kept going. Joanne captured his record breaking attempt:



So 25 green beans. That is a mighty fine number. THe video ends with Owen refusing #26, but he was just catching his breath. He had a little water, then got back in the groove. We put more on his plate, and as he continued to down them, he started sharing, giving one to Joanne and one to me. He kept the biggest ones for himself.

He finished the night with 36, with the last one being a raw one.

On Tuesday, he topped even that with 38, but I think that deserves an asterisk. He did the green beans first and he had, by my eye, more smaller ones. Still, when I ask people what's a good number of green beans for a toddler to eat (i'm talking about real green beans where you cut off the tips, not the canned cut up stuff), pretty much everyone says four. Nana claims it's hereditary though--apparently my brother and I both ate our beans, even choosing them over cookies, which perplexed my grandfather. If we did the same, I think Owen would pick the beans. But if it was a corn muffin... Well, Owen claims to like only one thing more than corn muffins and that's milk.

Laughter is the Best Medicine

Sometimes when we watch a scary or emotional movie, afterwards I will say, "Now I need a comedy". And we'll pop in a Seinfeld or Arrested Development or whatever comedy we have been watching and it will clear my mind and lift my spirits. After two weeks of being at home and not really watching any tv, I needed a comedy this weekend. Keith seemed to sense this when he put Anchorman in the player without even asking me if I wanted to watch anything.

The first few weeks of having a newborn can be pretty frustrating, and Sophie's homecoming has been no exception. It seems like the dirty diapers and the dishes (from feeding and pumping) are never ending. Sophie almost always wants to be held, which makes getting anything done almost impossible (slings are great, but there are some things you just can't do with the sling, like pump or nap). My two goals for the weekend were to go throw the frisbee and to decide what we are going to do with our backyard. Neither of those happened. I did get out of the house to go to church and grocery shopping. To a lot of people those are annoyances, but when you are pretty much stuck inside the house all the time, just getting out can be relaxing. When I was pregnant I was looking forward to taking Sophie shopping on my maternity leave. But since we rely on the feeding tube (which is portable but a burden) and can't take her to public places, getting out is hard. I did manage to make it out to Keith's league game last week, and will probably go this week. But my thought of perhaps playing in a tournament in early December is dead. I have gotten some exercise, but my legs need a lot more PT before my knee will let me play. Sophie herself is doing ok, but is pretty bothered by gas, a diaper rash, and irritation with her g-tube. She is consistently only taking about half of her feeds from the bottle, with really no improvement since she's been home.

All of this has made me pretty frustrated at times. I have to constantly remind myself of my own advice to new parents: remember that all phases (both good and bad) will end. I tell myself that Sophie will grow up to be a normal, smiley baby in just a few short months. But then sometimes I doubt my own words - what if she needs the g-tube for years? What if she has other developmental issues? I just have to trust that God knows the proper time table for Sophie, which is easier said than done.

In the meantime, I'm going to pop in another DVD while I do some more dishes. I don't think Anchorman helped any of Sophie's ills (I don't think she quite understood the jokes :-) ), but for me it's pretty good medicine.

The Art of Nippling

Yesterday we met with the speech therapist from the hospital to follow up on how Sophie is doing at home. (Speech, you may ask? Yes, apparently "speech" therapy includes nippling for babies.) The therapist has been very happy with how far Sophie has come since she was born. But she encouraged us to not push her to hard to avoid consequences in the future.

Most parents take for granted that their newborn will be able to eat (whether that means breastfeed or bottle) straight out of the womb. Sure, it might take some time to latch on the breast correctly, but the ability to eat is something they are born with, right? Not for premies. As the nurses at the hospital explained, eating is the most complex thing that a baby has to do. They have to coordinate sucking, swallowing, and breathing all at the same time. One of the common misconceptions is that if the baby can suck on a pacifier, then she is alert enough or able to eat. A pacifier only requires sucking and breathing; the swallowing part complicates things.

When Sophie was first learning to nipple, she would suck, suck, suck, suck, suck...swallow...breathe, breathe, breathe. It was a very slow process. She now has learned to suck, suck, swallow, breathe...suck, suck, swallow, breathe. This is what allows babies to down a bottle without taking a break. But Sophie still has some issues during her feedings, especially when she tires of nippling. This is where we as the feeder come in. If the nipple has milk in it, it will drip some out, even if she's not sucking. To help her not choke on it, we put her in a side-line position: she's on her side with her neck in a neutral position. By being on her side, if there is any extraneous drips from the bottle it collects in her cheek, not the back of her throat. We keep her hands in front of her chest so her throat and chest are open and she is relaxed. We also look for cues that she needs a break; if her head pulls back or she stops sucking we are supposed to tilt the bottle slightly so no milk is in it. Then we need to realize when it is time to stop; if she is not alert and rooting it is easier for her to choke.

The therapist explained that it is very important for us to not push Sophie too hard so that eating is a positive experience for her now. If she has a negative experience now, she might not be willing to eat solid foods as readily. She also explained that at 3-4 months, babies lose the reflex to suck when something is put in their mouths, so that is also a pivotal time to make sure nippling goes smoothly.

It's hard not to push her; I'd like to see her nipple all of her feeds so that we can have more "normalcy" (and avoid the hassle of the pump). However, as the nurses always said, Sophie has to decide when she's ready. I'm ready whenever she is. :-)

The day after a good day

It is 10:04 pm as I start to write this post. Owen is still awake. It appears I disrupted some karmic balance in last night's post about our bed time routine. This morning, at about 7:40 am, he came running into our room--he discovered he could get out of his bed and go where he wants.

So tonight, the "daddy don't go" turned into running after daddy. He's not staying in his bed. He is adamant about going to the our "bigger" bed. We're at about 75 minutes of this now. Joanne subbed in for me about 40 minutes ago. I don't think it's over yet. He's also agitated enough to climb out of his crib, so that's not a threat.

Hmm... maybe I should have went about that differently.

Sophie had a decent day. Not quite as good as yesterday. So consistency is still something she needs to work on. I do think she's getting quite a bit of rest though. We'll see if Owen gets any tonight.

POSTSCRIPT: I subbed back in for Joanne at 10:15. We read some more with him on my lap. Didn't work. I read to him from a chair next to the bed (we have been using the crib as the side rail, so I moved that out of the way). Didn't work. So I gave in and waited for him to go to sleep, which was around 11. I took a little nap myself. I left Owen's room after 1 am. Sophie did her normal somewhat awake/neediness between 2-6 am. Owen, after going to bed two hours later than normal made up for it by waking up 30 minutes earlier than usual. Outstanding.

A Good Day

Today has been a good day for many reasons. First, we had some awesome rain storms today.


The video was taken just after the fiercest part of the first storm. We had 3 total throughout the day. For those of you not in Phoenix, this may not be something noteworthy. But when you only get 7 inches of rain a year, getting 1+ in one day is huge. And there was wind. And lightning. And hail. I was loving it. Sophie, well, she slept through most of it.

[Parts in Blue written by Keith]
But even better than the weather was Sophie's day. Her feed log:
8:30 AM: 60 bottle 20 tube
11:45 AM: 80 bottle
3:30 PM: 15 minutes of breastfeeding
5:30 PM: 50 bottle 30 tube
8:30 PM: 75 bottle 5 tube
That's almost 85% (270 out of 320 prescribed) directly from the bottle (her daytime feeding schedule is set roughly as 80mL at 9, 1, 5 and 9), including two practically complete feeds. I also feel a somewhat vindicated, as I'm not a fan of the 4 hour feed schedule for Sophie. Owen was sub 3 hours for a long time. So her lack of strength might be a lack of energy from too long of a time to since food. I asked Dr. Aaron yesterday about flexibility in the feed because of that thought, so I think a fifth feed (or fourth and a half) may help. Plus, she latched on the breast for about 15 minutes. And actually got a good deal of milk from it, which really is a first. If anything was bad about her feeds today (and especially last night), it was that she spit up a lot of times. I am learning that I need to burp her more often, even when she is getting her milk from the tube.
Sophie also got some good sleep today, which meant that she also had some happy awake times. I used Megan's borrowed Baby K'tan during the rain and before during, and Sophie was very happy in it. After weeks of having a baby whose only awake times were spent crying, those are pretty special. The process of pooping continues to bother her, but tonight she even spent a couple of minutes on the changing table without crying, which might be a first. I remarked that today was a good day--perhaps a real turning point--a ray of sunshine on day that didn't actually have that much. Joanne overheard me telling Sophie this and got a little verklempt.

And Owen is very happy to have his baby sister home. While he seems to have some mom withdrawal, none of that seems directed at Sophie. He is excited to see her when he comes home from school. He asked to hold her again after dinner (which he didn't have much of--never start with dessert (the corn muffin)). He talked to her about the dog on his shirt, the flower on hers. He went to get her favorite car (the Sheriff for some reason we can't figure out). He went to get the letters of her name from the fridge.



After his bath, I brought Sophie up and I had Sophie on my lap and he climbed up, and we started to talking. "Sophie's not going anywhere" in a happy tone, he said. "Sophie's my baby sister! I'm her big brother!"

Then the night got better for me, as I got to put Owen to sleep. As Joanne mentioned, we moved him to a twin bed on the floor about 10 days ago. Now, rather than reading to him while sitting on a chair, we read while laying on the bed. So I read a story or three (Roo's Nature Day is the current favorite), then turn down the light, then we sing Old McDonald--he picks the animals. After I turn off the light he asks me to lay back down with him. Oh, how he snuggles! "Family nap daddy" "Don't go daddy" "Stay here daddy". If I start to get up, he'll grab my shirt or anything to keep me there. And I'd like to stay. It's one thing to have a sleeping toddler/baby on you who finds you comfortable. It's quite another to have them awake and want you there. It's tough to leave because I want to stay, but I know I don't want him to have the expectation that I will stay, as I don't want him to have that as a crutch to go to sleep. So I get up, he cries and asks for me. But when I close the door, he asks for Mommy. He's ready to sleep though, and has generally quite within a minute of leaving.

I didn't get a nap today like I had planned, but I did get some exercise (rowing), a shower (the mothers out there know how special that can be), and some appointments made. AND a blog post done.

That's a good day! :-)

Home Sweet Home

Sophie is now home! Which means that we are happy. And tired.

Friday was a very emotional day for me. I was saying goodbye to my "job" for the last 10 weeks, which was both sad and happy. As I've said before, everyone at the NICU was wonderful, and it was a safe haven for Sophie. Saying goodbye to some of the nurses who helped us out and were so friendly to our family was hard. But it is very exciting to bring Sophie home. The best part of leaving was the excitement that Owen showed in bringing Sophie home. He was jumping around with delight. On the ride home he told me to stop crying, and I explained to him that it was a happy cry. Keith and I realized that kids don't have happy cries; I wonder at what point that changes.

Keith's parents took Owen Friday night so that we could focus on Sophie. That was a big help. Our afternoon/evening/morning was spent figuring out feedings, medicines, where to put all the supplies, and trying to get some sleep. Our house is slowly getting cleaned up and organized. Sophie actually did sleep pretty well, but gets rather upset whenever she has a dirty diaper, which is often. We were told to give her a continuous feeding at night - she gets 315ccs over an 8-9 hour time period. I have to add milk to the pump once during the night, but that is much easier than trying to warm up milk when she wakes up hungry. We are still up and down multiple times during the night, making getting enough sleep difficult.

One day time feeding takes a lot of work:
1. Mix up the breast milk with some Neosure to add calories (which you can do ahead of time for the full day's feedings).
2. Put it in the bottle and warm it in hot water.
3. I can try breastfeeding a couple times a day, which usually involves Sophie trying to latch on a couple of times, maybe sucking for a few minutes, and then falling asleep.
4. Then try the bottle, during which I have to look for cues that she needs to stop (not focused or about to choke). She generally takes about half of the bottle before going limp or being too unorganized.
5. Burp (usually a couple times).
6. Then set up the pump, which involves priming, attaching to Sophie, and setting the rate.
7. If she's due for any meds, we do that during her tube feed.
8. Pump myself.
9. Clean everything.

This can easily take 1.5-2 hours total. Compare that to breastfeeding:
1. Breastfeed for approx 30 minutes.
2. Burp.

Ok, so I'm over simplifying breastfeeding (especially to start), but it really is the easiest way to feed once you get the hang of it. We're still getting used to everything, so I'm hoping we get more efficient at the whole process. I really hope that we will be solely breastfeeding some day.

Owen has been wonderful so far. He hasn't really shown any jealousy so far. He has said "Hi Sophie!" to her many times, and brought various toys and books to her. The worst thing that he's done is take her pacifier and put it in his mouth (good thing we have three!).

From Sophie comes home

Today he was playing with the letters on his fridge and I helped him spell out our names:

From Sophie comes home

He doesn't quite have the left to right thing down yet. :-)

We are now a family of four. I can't help but look back at the fun I've had with my brother and our family growing up, camping, sailing, swimming, etc. And although things are a bit tough and tiresome right now, I know that one day we will be making our own family memories. And that makes me cry. A happy cry.

From Sophie comes home

The Light at the End of the Tunnel

Sorry for taking so long to write another post. Sophie is recuperating pretty well from her surgery on Wednesday. She started eating on Saturday with a small amount of milk (10CCs), which they are increasing every 6 hours. She should be up to her full feeds (~75CCs) by Wednesday night. She's been pooping a little, which bothers her, but her surgical scars are healing nicely. The G-tube is in, and we use it for her medicine and whatever portion of her feeds that she doesn't take from the bottle. Since the surgery she has had periods where she gets really upset and shrieks her loud cry. (They even had to move her out of one pod because another baby in the pod needed quiet!) Normally she quiets down as soon as you pick her up, but not so during the last few days. But it has been less than a week since surgery, so I suppose she is allowed to complain. :-)

I have thought several times how she now looks like a "normal" baby; she's 8 lbs, can open her eyes wide, and now has nothing on her face, really for the first time since her birth:

From LGA Arrives!

The current plan is for her to go home on Friday. Yay!!!!!! That is very exciting, and at the same time, scary. No more monitors to tell me she's fine (which I'm not really worried about, but you do get used to them), and no more nurses to help (although we will have some nurses come to the house). One big convenience of having Sophie at the hospital was that everything came to her - all the doctors, all the tests, and all the medicines came to her bedside (or maybe downstairs). We will now need to keep track of her medicines/vitamins (I can think of 4 off the top of my head) and doctor's appointments (surgeon, gastroenterology, speech therapy, developmental specialists, etc. plus the normal pediatrician appointments). But at least now we can walk around with her, take her outside, and go places. Although I'm not sure how much we should be taking her out in public to keep her from getting sick. I am a little worried how she is going to fare going from the sterile hospital to our anything-but-sterile house. But at least I can keep her on clean blankets.

We have been trying to warn Owen of the change by telling him that Sophie will be coming home soon. I'm not sure how much he understands that. I'm sure he will adjust pretty well, although I'm sure there will be some jealousy. Owen started sleeping in his big boy bed (out of the crib) this past weekend. So far Owen has done really well in his new bed, but I'm scared for the time when he actually realizes that he can get out of it by himself in the middle of the night. Odds are very big that he will be jealous of where Sophie will be sleeping (our room).

Owen is continuing to delight us. I love hearing him sing (Itsy Bitsy Spider and Twinkle, Twinkle Little Star), and he constantly amazes me with his memory. We have a Winnie the Pooh book that he recites whole sentences to us as we are reading. I tried playing Go Fish with him last weekend. Even though I had to pretty much walk him through the whole thing, it's exciting to know that we can now introduce more games to him. Let me know if any of you parents have recommendations on board games for this age, as I'm starting to think about Christmas presents.

This past weekend we were at a baby shower for a friend where the guests were asked to write down words of advice for the new parents. My advice was to remember that all phases will come to an end. So hang on through the bad times and cherish the good ones. I am happy to report that our "NICU phase" (which hasn't been all bad) is soon coming to an end.

I can see the light!!

Decisions, Decisions

First off, happy 2 month birthday Sophie!!

Boy, what a crazy day! It started with a call from Dr. A (one of the neonatal pediatricians at the NICU) that said he had talked to the surgeon, Dr. Egan, about Sophie's surgery. Apparently Dr. Egan had thought that he and I agreed to not do the G tube (a feeding tube that is surgically inserted into the belly) and would instead only do the NG (the feeding tube that she has now that goes down her nasal passage and into the stomach). So he scheduled the analplasty (the surgery to correct her anal opening) for tomorrow at 7am. But Dr. A told Dr. Egan that it was his understanding (and recommendation) that she get the G tube. So they needed us to clarify our decision. Today. Because if we did do the G tube, the surgery couldn't be done tomorrow. So I told them I was leaning towards the G tube, so let's delay the surgery. I figured that would also give me more time to make the decision. But then at 3:30pm they told me they could do both surgeries tomorrow, so I needed to make a decision tonight.

I vaguely remember my discussion with Dr. Egan, but it was a couple of weeks ago, back when I had hope that Sophie could come home without any tube. Unfortunately that is not the case now. She will hit the "deadline" of 41 weeks tomorrow and has not shown a ton of improvement in her volume of nippling (although her technique does seem to be better). Until today I didn't realize that she could go home at this point with just the NG tube, and not a G tube.

There are pros and cons for each, and I had (and am still having) a hard time making the decision. [Let me clarify that I discussed this with Keith, but ultimately it would be my decision since I will be the one taking care of her the most.] My first reaction was to say if we could avoid a surgical procedure, let's do the NG. But the pediatricians recommended the G tube, mainly because they believe it could be a long time before she nipples her whole feeds (months). The NG can be a hassle because the tube can come out, and the baby does not like it when it is reinserted. The G tube could always be inserted in a few weeks, but that would involve another surgery, so it's best to take care of it now that she's already going under anesthesia.

I made an appt to talk to the surgeon tonight, and before that I talked to our friend Harry who is a pediatrician (who was very helpful). I decided to go ahead with the G tube because it seemed like it would be easier for us, and probably more comfortable for Sophie (barring any infection and after the initial effects of surgery). I really hope that she proves the pediatricians wrong and starts nippling her full feeds soon and the G tube is deemed unnecessary, but I have prepared myself for the possibility that it could be quite a while before she does that.

The good news is that this means Sophie will be coming home soon. They figure she should be ready about a week after surgery. We're mostly ready, but have a lot of last minute things to do (cleaning, buying nipples, etc.).

If you had told me two months ago that Sophie would still be in the hospital at this point, I wouldn't have believed you. And it would have depressed me. At this point I've learned to expect the unexpected and that really it's not something to get depressed about. Sophie is a wonderful blessing in our lives!!

Happy Due Date Sophie!

Today was Sophie's due date. It is also her 8 week birthday. For Owen's due date we took a picture of Owen and I with one brownie with 40 on it, signifying how many days old he was, and one brownie with a 0 on it, signifying his adjusted age:

From Owen

Today I put sprinkles on a cookie to make a 56, Sophie's age in days. We're not supposed to have food in Sophie's room, so it's covered in plastic wrap (and I quietly took the picture while the nurses weren't paying attention. Shhh! Don't tell! ).

From LGA Arrives!

For Owen, his due date was sort of a celebration. Today was more of a commemoration, as it's not exactly a happy occasion. To me it just accentuates the fact that she's still in the hospital. She is still working on nippling her feeds. She is doing better - I can tell her technique is improving - but she still tends to fall asleep half way through her bottle. It's looking more and more (to me at least) like she will be coming home with a feeding tube. The good news is that they can't find a reason for her not to be nippling better (the EEG and MRI of her brain look good, which was a big relief), so she may just be a slow learner or is still affected by the surgery. I was encouraged today by how long she was able to latch on to my breast when we tried breastfeeding - still not getting much milk, but that was definitely the best she's done so far.

In other news, Nana and Sophie now have the same haircut. :-) Unfortunately you can't tell from today's photo (who hired this photographer, anyway??):

From LGA Arrives!

I was feeling a bit depressed when I came home from the hospital tonight (Sophie was wide awake when I left, which makes it hard to leave), but I got home in time to put Owen to bed, which made me feel better. When Owen first started going to school (before he could talk very much), I dreamt of the day when Owen would be able to tell me what he did at school. Up until now he's been able to answer our questions about school, but mainly with one word answers. Tonight, as we sat in the dark in his room, he told me all about his day: reading to Sophie (the doll), playing with the parachute, playing with Ms. Jenny and cars, and what they did when the fire drill went bzzzzz like a bumble bee (they went outside). What a joy!!

The Waiting Game

Today was a frustrating day for me. The main thing keeping Sophie in the hospital right now is her inability to nipple her feeds. I was at the hospital for 3 feeds today, and the max she took from the bottle was 15 CCs (her total feed is 64CCs now). If you ignore today and yesterday's daytime feeds she is still improving (they tell me she has nippled a full feeding several times at night), but I haven't been able to see the improvement the last couple of days. Part of the issue is that the docs thought she might have a Urinary Tract Infection (UTI). In order to test for a UTI, they took a urine sample from a catheter on Tuesday. She was not happy during that. That sample came back positive, but since they had a hard time getting the sample, they don't think it was a clean sample. So on Wednesday they took another sample, this time giving Sophie a sedative to calm her down. So far that sample has come back negative, but we won't know for sure until tomorrow. In the meantime they are giving her additional antibiotics (she was already on amoxicilan for her kidney) through an IV in case she does have a UTI. Hopefully tomorrow it will come back negative and they can take the IV out.

Once a day I try to put Sophie to breast to get her used to breastfeeding. She typically will latch on and suck for a few seconds, then spit out the nipple. She'll repeat that a few times then either become too upset or fall asleep. I am having a hard time seeing how the progression from bottle to breast will go. I know it should eventually happen, but it seems like a long way off.

From LGA Arrives!

Sophie "smiling" at Nana.

I am also missing frisbee. Fall league started this week. This is the 4th league I will miss since I tore my ACL in July '09. I didn't really mind not playing while I was pregnant because, well, pregnancy is a happy thing. Now I'm not playing because my injured leg is still bothering me. It's just not strong enough. I sometimes limp just walking around, let alone running. I know it will get better with exercise, but that, once again, seems like a long process.

I thought the good Lord had already blessed me with a good dose of patience, but apparently he wants to teach me more. :-) That's ok with me, as long as He helps me through it all, which I know He will.

Owen now has an attachment to a little dollhouse baby that he found at my parents. He calls her Sophie. He sometimes reads to her, and has her help him with the puzzles. It's really cute, but the doll is so small I'm worried we'll lose her (or that he'll choke on her!). I bought him a bigger doll to hopefully replace her, so we'll see.

We're a little worried about how Owen always wants us to help him with things. "Feed me" and "No, you do it!" are not uncommon words from his mouth. He's not very independent, which goes along with his shyness. So today we were surprised when he wanted to go down the stairs all by himself. (He did great, holding on to the railing and being careful.) So maybe there's hope!!

From Summer 2010

Owen with the little "Sophie".

My favorite!

Owen loves his cars. That's his toy cars from the movie Cars. He currently has 2 Lightening McQueens, Mater, Sally, the Sheriff, Sarge, Fillmore, Ramone, Flo, Red, Tex, Chick Hicks, The King, and Mack Truck (and 20 more that he doesn't have yet from a bulk Ebay purchase). Keith loves how Owen says "Dustin Mellows" (a delivery truck from Radiator Spring's hey-day; a very small character, who appears in the movie for a total of two seconds), so he started calling that his favorite. It got to the point that Keith only had to ask, "Owen, can you do daddy a favor?" and Owen replies "Dustin Mellows!" (it really is incredibly cute!). (My second favorite is Alarm Clock for much the same reason) Now everyone has a favorite - Owen's is Sally; mine is Flo. I have no idea how Flo (the only car with an ultimate reference of course) became my favorite. That's just what Owen decided. (If anything, Mater is probably my actual favorite; but that's taken - it's Toolman's favorite.) Nana's favorite is Tex, which I rationalized as her dad (my grandfather) worked for Texaco, not that Owen would know that. Grandma's is Ramone and Grandpa's is Doc Hudson. So now every day I come home from the hospital, Owen comes running to say hi, then immediately runs and gets Flo and hands her to me. My response, of course, is "Flo!! My favorite!!".

And much like how everyone has a favorite car, everyone has an animal associated with them. Owen is, of course, a lion--king of our "jungle". I am a horse that he can ride. Joanne is a camel (she used to have a hump). The teacher at school is a sting ray (the teacher in Finding Nemo). Grandpa is a shark. Grandma is an elephant. Nana is unfortunately a piggy, but that's pretty good word association as her name is Peggy. But the most appropriate is for Tooman--dinosaur!

I'm not sure what Owen's favorite vegetable is (if only avocado was a vegetable... I would guess maybe corn, but he doesn't get that too often. I'll say edamame or sweet potato), but he's been pretty good at eating his lately. Keith found a trick to get him to eat his dinner when he was getting too distracted. Owen was naming the cars he had on the table, when Keith said, "Is that a green bean in your mouth?". This made Owen giggle and immediately stuff some green beans into his mouth. "Is that a carrot in your mouth?" In goes a carrot! Not sure how long this will work, but so far it's lasted two nights.

Yesterday we heard one of my favorite words these days: normal. As in Sophie's head MRI. Alleluia!!! That is such a big relief. Lord knows what myriad of things they could have found. Sophie is also starting to nipple better, so things are looking up. She still gets pretty upset with her gas, but hopefully the Mylocon they started her on yesterday will help. I'm considering giving up milk again (I used soy milk and soy yogurt when Owen was younger), but that still means a large supply of lactose-fortified breast milk that's in the freezer.

She is feisty (and LOUD) when she is upset. She tends to get the most upset after her 5pm feeding. The other day I had to change her diaper three times for poops within a few minutes of each other. And yesterday she got so upset that she spit up part of her feed so we had to change her outfit (it's hard to tell if she spit up because she was upset, or upset because she needed to spit up). I used to think it was her vitamins that upset her so much, but last night she hadn't even had her vitamins yet. My theory is that she knows that's the time I want to leave, so she does anything she can to get me to stay (and it works!). :-) My favorite day will be when I leave and she gets to go with me.

First Day of School

From Summer 2010

Monday was Owen's first day of "school" (daycare) in a new classroom and with new teachers. Drop off went amazingly well. We had expected it to be an ugly affair (he had last week off and had a lot of fun), but he immediately started playing as soon as we went in, and was unfazed when we left. Yesterday was pretty easy too. [In fact yesterday was really cute - I was reading to Owen and his friend Ashlyn read with us. When it was time for me to go I gave Owen a kiss goodbye. Then Ashlyn said she wanted a kiss too! So I gave her one. :-) ]Today he kept saying he wanted to go back to his old classroom, so I think the novelty has worn off. But I'm sure pretty soon he will love his new teachers as much as his old (and he still gets to see his old teachers - they go out to the playground together).

Dad says:

The bigger change, though, is the pickups. Owen's always been happy to see me when I pick him up. That hasn't changed. But before last week, I think there was fewer than five occasions when we left BLC in less than 20 minutes. During cooler months, we'd sit outside and have a snack (the remainder of lunch). During the summer, it was a minimum of three books. Now it's been three days in a row of Owen being ready to go, right away, with eagerness to go the hospital "to see Sophie" (but really he means the Lincoln Logs) and no complaints about it being hot or requests to be picked up.

Last night Owen woke up at 5am pretty upset. He kept saying "Owl scared me!!". His first nightmare (that he could tell us about)! We tried to get him to go back to sleep by letting him in our bed, but it didn't work, so poor Keith got up with him (and did two puzzles with him. He's really good with the underwater puzzle [he can place all the pieces on his own, with an occasional prompt on what type of fish he should be looking for), and this morning we did the solar system puzzle for the first time). We're pretty lucky that this doesn't happen more often; hopefully this is not a sign of things to come. If so we'll have to make a decision on the "let him in our bed or not" issue. But of course we'll let him in the bed. I think. Actually, there may not be room for him, as we may be trying a co-sleeper for Sophie and have some expectation of having her in our room for a while when she does finally come home, so a talkative/playful early AM Owen and a sleeping Sophie just won't mix.

Sophie is doing well, but there is some concern that she is not taking more of her feeds from her bottle. For a couple of days she was only taking 5-10CCs from a bottle, and the rest of her feed from her feeding tube. She took about 25CCs from me today at one of her feeds, so she is getting better, but they are still going to do a MRI on her head to make sure there isn't any neurological issue that is keeping her from eating more on her own. It seems a bit like overkill to me, but I guess it's good to make sure. They are delaying the second surgery (to fix her rear plumbing problem) for a couple of weeks to see if she improves on her feeds. If she doesn't, they may insert a feeding tube into her abdomen at the same time they do the surgery. This will allow her to go home before she goes up to full feeds. I'd rather not have to worry about having a feeding tube at home, but I guess it's better than having her stay in the NICU for a longer period of time. As it is she will be here past her due date of Sept 15th.

Last night when we were talking to a neurologist, he started off by commenting on how large Sophie's chart is. I joked back that now we get to add an MRI to the list. I'm sure the doc has seen even larger charts, but he's right - it's a lot to keep track of. My Mom mentioned today that I need to keep track of everything because doctors will ask for that kind of thing. She's right - I'm going to ask the nurse practitioner tomorrow if she has any ideas on how best I should do that. I know they give a copy of Sophie's chart to her pediatrician when she is discharged, but I'm not sure if they give us anything (or at least anything that I would understand).

One of the things I've learned here at the hospital is that while there are plenty of babies better off than Sophie, there are also ones worse off. I was reminded of that yesterday when Sophie changed pods and got new roommates. One of the goals for a baby in the room is listed as "stay alive". Wow. I continue to count our blessings.

From LGA Arrives!

Mooooooo

I am a cow. A milking cow. Every 3 hours (except at night - I skip one session at night), I hook my breasts up to a pump that takes the milk out of my breasts for 10-15 minutes and puts it in little 2 oz bottles that are provided by the hospital (thankfully; otherwise that would get expensive!). It's a bit tedious pumping 7 times a day, but I can watch tv or go online at the same time, so it's not too bad. Of course I'd rather be actually breastfeeding, which should start happening in the next couple of weeks. I get on average 100-120 CC's (2 oz = 120cc) at every session. When Sophie was eating before the surgery, she would get 55 cc's at a feeding (every 3 hours). You can do the math - I have a lot of extra milk saved up. At one point the hospital told Keith I had a week's worth of feeds saved up. A week ago they told me to stop bringing what I pumped at home into the hospital. So I am freezing it at home. As I write this I am helping to make room in our freezer by eating ice cream (yes, it's a tough job, but someone has to do it). I'm not sure how we're going to use up all of that milk, but it lasts 6 months in the freezer, and up to a year in a deep freeze. Since her surgery Sophie hasn't been getting any milk, so even more is going into the freezer.

Until today. Sophie's recovery is going well, so they gave her 5 cc's of milk this afternoon. She seemed to tolerate it just fine, so they will continue to up her feedings, slowly. She was much more alert today than yesterday, and continues to get various tubes taken out of her. They let me try holding her today, but she was too uncomfortable, so she went back in her bed.

Before I went to the hospital today, Owen and I went to the new aquarium in Tempe (he has this week off from daycare). Owen wasn't as excited as I was expecting, but I think that was because it was a bit overwhelming for him. It wasn't busy, but they have loud music in the background (that was annoying to me), and it really is a different experience for a toddler, especially a shy one like Owen. His favorite part was the sharks, which there were a lot of.

Tomorrow Owen and I will be going to Sedona with my parents. It will be nice to get away for a bit, if even for just 24 hours. Although I will miss Sophie, of course.

But maybe we'll see some cows along the way and I can say hi. Mooooo.

From Europe September 2006

Poop!

The nurses at the NICU sometimes joke about how much of their day and conversations revolve around poop. It really is an important measurement of a baby's progress - it's color, consistency, volume, & frequency can tell you a lot. Unfortunately I wasn't there for it, but I bet there was lots of hullabaloo today - Sophie pooped twice. This is a really good sign, and wasn't really expected yet. It shows that her digestive system is starting to work again. It was still pale (which is a symptom of biliary atresia because of the lack of bile), but they wouldn't expect it to be much different at this point.

Sophie is also progressing in other areas as well. The doctors took her off the ventilator (which breathed for her), and she is now receiving oxygen through a cannula (the two prongs that go in the nostrils). They were able to wean her to a lower dose of pain medicine, which means she is a little more alert. She will probably start getting food on Wednesday. (She is now receiving liquid nutrition through an IV.) I can't hold her yet, so I stroke her head a little, and put my finger in my hand, which she grabs. I've started reading "Sophie's World" to her in case she can hear me. We started this tradition with Owen - Keith read "A Prayer for Owen Meany" to him after he was born.

I didn't get to spend that much time with her today because our family trip to IKEA took longer than I expected - including travel time the trip took 4 hours! That did include lunch at the IKEA restaurant (the Swedish meatballs are really good!). Owen had a ball, especially in the beds and kid's sections, but was overtired by the time we got home.

I think Owen is starting to catch on about having a sister. The teachers at school said that Owen spent most of the day Friday with a baby doll he called Sophie. One of the nurses at the hospital gave Owen a little stuffed dog, and said it was from Sophie, which he got a big kick out of ( he ran around saying "Sophie gave me a doggy!!"). She also gave Sophie a little stuffed horse (a really sweet gesture), which Sophie was grabbing today.

So overall Sophie is doing really well with her recovery, and we are in good spirits. Keith, Nana and Owen all have this week off from work/school, so we will likely spend some good quality family time together. Tonight we were taking a family "nap" (laying on the floor) together. I started getting emotional thinking about when Sophie comes home and our family will finally be whole - that still seems so far away, but with the liver surgery behind us, it is a big step closer to reality.

A weekend of rest for Sophie

Today Sophie had her liver surgery. They did the cholangiogram, which confirmed the diagnosis of biliary atresia, so then they did the Kasai procedure to fix it. Sophie left her room in the NICU to go to the OR a little after 10am. A little after noon we were told they were starting the Kasai procedure. The six of us (both sets of grandparents were there) took a welcome break from the hospital and went to Applebees across the street for lunch, knowing we wouldn't hear anything more for at least two hours. Sophie finally came back to her room about 4pm.

The doctor explained that the blockage seemed to be between the gall bladder and the intestine, which was good news (meaning the liver itself and the main ducts that come out of the liver are more likely to drain properly when attached directly to the intestine, which is what the Kasai procedure does). He said they could see bile draining from the main ducts, which is encouraging. It'll be a couple of weeks before we get preliminary news if the procedure worked, and months before we get a better idea of how successful it was, but everyone's spirits were much higher after the surgery than before. It's always good to see the surgeon smiling after surgery.

It was interesting being in the room as the nurses were getting Sophie settled back into the NICU. There are multiple tubes going in and out Sophie for various reasons (catheters, IVs, breathing tube, etc.). It took several nurses to keep track (and "chart") what medicines she got and which tube to put it in. She didn't get any blood during the surgery, but they were going to give her some afterward to give her more strength. They were still working on everything when we left the hospital at 6pm.

To us Sophie looked really good after surgery. She was puffy and a bit pale, which actually made her look more like a normal baby (she was dark and a bit skinny when she was born). They said she will probably come out of her trance sometime this weekend, at which time they would try to take out the breathing tube. Based on how she reacted to the morphine they gave her yesterday (to attempt to put in an IV, which was unsuccessful; Sophie has very small veins), she will be resting in a drug induced state for a while (they had to warm her and give her oxygen yesterday because she was so relaxed from the morphine). She won't get food (but will get nutrients through her IV) for a few days until her digestive system "wakes up" and starts working again. I was surprised at how big her scar is (9 cm), but the doctor's assured us once again that babies heal better than adults do.

I was definitely upset this morning when it was time for her to go to the OR, but having supportive family around was very helpful. I am also extremely happy with the care that Sophie, and us, as parents, are getting from Scottsdale Shea. The nurses, doctors, various therapists, lactation consultants, social workers, etc. have all been wonderful. I believe God brought us there for a reason. It was hard to leave her tonight, but it is good for us to get away from the hospital (I spent last night at the hospital in a nesting room). And I know she's in good hands.

Here are some pictures from yesterday and today:

From LGA Arrives!

We brought Owen to the hospital the day before the surgery because we realized we didn't have any pictures of him and Sophie together. We didn't pick her up because she was so out of it from the morphine.

From LGA Arrives!

The morning of the surgery. She did pretty good for not being able to eat after 4am.

From LGA Arrives!

Sophie relaxing after the surgery. You can see how big her scar is.

Surgery #1

Sophie has her first (and biggest) surgery tomorrow (Friday, Aug 20th) at 10am. They will be doing a cholangiogram to confirm whether she has biliary atresia (bile ducts that are no longer working or "blocked"). If it is confirmed, (and that is what the doctor is expecting), they will then do the Kasai procedure.

Talking to the doctor on Tuesday about the procedure was a reality check for me. He didn't really tell us anything we hadn't heard or read already, but it finally sunk in. My hopes of getting everything fixed before she came home and then living happily ever after were pretty much smashed. Even if the Kasai works (which happens about 1/3 of the time), we will always have to keep a close eye out for issues and follow up with doctors (which could lead to a relatively "normal" life I suppose). But the doctor said that 1/3 of these surgeries last for a period of time, and then a liver transplant is needed, and another 1/3 of the surgeries don't work at all and a transplant is needed. Those are not the best odds. And that's just the liver issue - there may be other issues/syndromes that pop up as she grows up.

But we can't dwell on the "ifs". We just have to live day to day. I know that God will give us the strength to deal with whatever comes our way. He has already blessed us with so many gifts (wonderful family and friends, Owen, good finances, and each other).

Terrific Twos

This blog has so far been most about Sophie, so this one will be dedicated to Owen. He is being as adorable as ever. Don't get me wrong, he is definitely in the terrible twos (at least for him), but he makes up for his tantrums by saying/doing cute things.

As I believe I've mentioned before, Owen is repeating a lot of what we say. Owen's teachers say the classroom is a bunch of parrots. That brings a lot of laughter from us, as it's humorous how he says some words. We've taught him his full name, which sounds like Owen Benty Apple (his middle name is Bentley). Today, while I was on the phone with a nurse, Owen repeated "displaced anus" (one of Sophie's conditions), which the nurse heard and got a kick out of. That's all I need - Owen going around school saying "Sophie has a displaced anus!".

Owen is, as usual, reading a ton. He loves going to the library or getting new books. He is also getting really good at puzzles - he loves his fish floor puzzle and his block puzzle. He knows all of his letters and is getting better at his numbers - he can now count to 14.

I love to hear him sing. His current favorites are "Twinkle, Twinkle, Little Star" and, of course, "Old McDonald", which is just as often about Cars (the movie), then it is about animals. He can sing most of the ABC song, although he sometimes skips letters.

A friend once told me that it's not worth fighting kids over food. You're not going to be able to force them to eat something. If you keep offering them good foods, they will eventually eat what they need. I've found that is true. We definitely have to say "no" sometimes ("no fishy crackers before dinner"). But if he says no to something, we try to keep things on hand that are relatively healthy that he will often say yes to (bananas, avocado, yogurt, cheese, edamame). It's definitely frustrating at times, but overall I think we're doing pretty good. It helps that Owen doesn't seem to like too many sweets (he has refused ice cream every time it's offered). And he inevitably makes up for the frustration by doing something funny. Tonight at dinner we said something about putting milk in his belly, at which point he proceeded to giggle and point his sippy cup at his belly, which, of course, made us giggle!

One thing that Owen has done recently that at first was amusing, but now worries me a bit, is falling over onto us. The first time he did it the three of us were on the couch, and Owen would stand up, then literally just fall over or jump onto us (usually backwards). It started to worry me when he did it to me on the tile kitchen floor (I caught him and made him stop). Then he did it with Keith on the bed at Nana's house (he was getting pretty energetic with it, so I made him stop). Wow, what trust kids have. I don't think I could do that (you will never catch me bungy jumping)!

It is really cute to talk to Owen on the phone now. Before he used to just listen intently to you on the phone for a minute then put down the phone and go about his business. Now he'll answer you if you ask him a question. Still only one or two word answers, but really cute.

So overall living with a two year old hasn't been too bad (although we'll see what he's like when Sophie comes home!). I think we've dealt with the tantrums ok, mainly by using distraction techniques. Getting ready for school is usually an exercise in distraction: he doesn't like regular clothes (he'd rather wear pajamas), so we have to distract him with something while getting him dressed. Plus he never wants to leave his toys to go to school. Today I was able to get his sandles on and get him outside and into his car seat all with a cup of apple juice (after saying he didn't want to wear shoes and didn't want to go to school). Score 1 for Mommy!!

What's in a name?

Who are you? She had no idea. She was Sophie Amundsen, of course, but who was that? She had not really figured that out--yet. What if she had been given a different name? Anne Knutsen, for instance. Would she then have been someone else? -Sophie's World

Talking about names to one of my friends who just had a baby reminded me that I haven't posted about how we came up with Sophie's name. We really had a hard time with this one. It also took us some time with Owen, but I don't remember it being as hard. We pretty much just had to choose between Owen and Luke (Keith liked Owen, but I had to be convinced). This time we had a list of names, but neither of us really felt any of them were all that good. The main ones on the list were Audrey, Ainsley, Chelsea, Sophie, and Estelle. For a while I was pushing for Ainsley, but Keith thought it was weird to pick a name that was really only known on tv (the blond Republican on The West Wing). I also found I couldn't get over the blondness of the name and couldn't use it for a black-haired baby. If she hadn't been born so close to Chelsea Clinton's wedding we may have ended up using Chelsea, but I was never a huge fan of the name. Keith was fixated on Estelle for a while after she was born (he liked that it was uncommon, but people still recognize it), but we were worried that other people wouldn't like it (the grandma-ness of it; plus for me it didn't pass the yell test). Audrey was a nice name, but didn't have any draw for me. Sophie was too close to Sophia, which is a VERY popular name (which we wanted to avoid). Since none of the names really appealed to us that much, we briefly tried some off-the-wall names like Coral (Keith wouldn't allow us to name our child after the mother in Finding Nemo, even though he came up with it).

In the end we let Owen decide. Before the baby was born we would ask Owen, "Should we name your baby sister (insert name)?" Sophie was the only one he consistently said yes to. On our way to the hospital after my water broke, Owen was still focused on Sophie. That was what eventually convinced me to pick it, and I convinced Keith to go for it. We had originally said we would use Virginia as a middle name (we wanted something that meant something to us, and that was my grandmother's name, plus growing up I vacationed in Virginia to visit my grandparents). We decided to use Estelle since we liked the name but couldn't quite pull the trigger. We figured that if she didn't like Sophie, she could go by Estelle.

For the first couple weeks of Sophie's life, Keith said he didn't like it and even talked about changing it. Luckily he couldn't come up with anything to replace it with, so it's staying. I later had a nurse at the NICU tell me that before we named the baby, she was telling another nurse that she looked like a Sophie (she didn't know it was on the list). She was super excited when she found out we did name her Sophie. And I took that as a sign that we did well.

In case you're wondering, Sophie (or actually, Sophia) means "wise".

In other news, we met with the geneticist, Dr. Aleck, today. We had already heard the results of the chromosomal tests (everything was negative for the tests they did). To me that was good news, and he agreed, but it was interesting to see his take on it. To him her medical issues were a bit of a mystery - since he couldn't find a known "syndrome" that explains her set of issues, he seemed almost disappointed. I asked if it was possible that they were just a coincidence - and didn't have to be explained by a syndrome - but his answer was a bit vague (which I guess in this case reality is vague). He pretty much said it depends if other medical or developmental issues pop up as she gets older. He recommended that we bring her in to see him every 6 months to a year. I'm not sure how to take that. Do we really need to worry about her as she grows up, or is this a case of having too much information, and looking for a solution (or cause) when there isn't a problem? I guess we just need to be aware of how she develops over time, which really isn't that different than any baby.

Owen seems to be developing just fine, although in the "feeding himself" development he's taken a step back. He now requests us to "feed me". Even with his milk bottle sometimes. I chalk it up to him being a two year old, and I am hoping it's just a phase. It's a little weird because just a couple of weeks ago I thought he was moving to the "I want to do everything myself" phase. Ah, life with a two year old. He keeps us on our feet!

And then there were four

It struck me today as I was signing thank you cards that we are now a family of four. How wonderful is that! It still doesn't feel totally complete yet, though, since we're not all together very often. Owen visits Sophie 1 or 2 times a week, so it's usually my "Owen family time" and then "Sophie family time". Sophie doesn't feel completely "ours" yet - that won't happen until she comes home.

Which, unfortunately, will be a while. We were spoiled by Owen being able to come home from the hospital so quickly. Today we had a family meeting with the pediatrician at the hospital. We didn't have any new info, but it was good to get everything explained again to make sure we understood everything. The current plan is to do the anal repositioning surgery not this week, but next week. They would do the cholangiogram (to take a closer look at the liver to see exactly what the issue is) at the same time. If it does turn out to be biliary atresia, they would do the Kasai surgery to fix it about a week later. She would then be in the hospital to recover probably two weeks after that. Which totals up to 4-5 more weeks, getting her close to her due date. She's already been in the hospital for 2.5 weeks. That's almost two months! Which is both long and short at the same time. I'm sure the remaining time will go quickly, but it still sounds weird to say my baby will be in the NICU for two months. But I am reminded daily how lucky we are by Sophie's pod-mate, Gavin, who has been in the NICU since 4-5-10 (born at 27 weeks; he will hopefully beat us home). His other pod-mates are triplets - I definitely don't envy them either!!! :-)

It's a longer commute, but my boss is much, much cuter!!

It's a good thing my boss has a sense of humor. :-) And is understanding and flexible, along with everyone I work with at Freescale. I left them somewhat in a bind, as I wasn't able to train them on everything, and even for what I did train on, it's hard to fully understand right away. I'm surprised I haven't gotten more calls from them, but I know they will get through everything ok. But I'll probably be gone longer than I was for Owen. My paid (at 90%) maternity leave is 6 weeks, and then I can take 12 weeks of unpaid family leave after that. With Owen the 6 weeks took me to his due date; there was no way I was going back to work that soon (I started working part-time from home a few weeks after that). With Sophie, the 6 weeks takes me to 2 weeks BEFORE her due date. She may even still be in the hospital at that time. What sucks is that if Sophie was still in my belly, I would've been able to finish up some training, and then go on short term (paid) disability - right now I would be scrapbooking at home and getting paid for it, then I would still get the 6 weeks paid after she was born. But because she came early (and it's no longer MY medical issues, it's hers), I only get paid the 6 weeks. We have been blessed financially, so this isn't an issue for us, but I can see how much of a financial burden this is on other families.

Sophie is at Scottsdale Shea hospital. That's about a 20 minute drive without traffic, and about 30 minutes with. It's not really that bad a commute (and it's actually very pretty), but at first it was frustrating because we live within walking distance of Banner Desert. But from what I have seen & heard, we are at a great hospital, so I don't mind filling up the gas tank more often. I am very happy with the care that Sophie is getting. We were unhappy when Chandler Regional hospital sent Owen (a 34 weeker) home at 2 days old, and we had to go back into the hospital (this time Banner Desert), the next day. Plus, Shea is closer to both sets of grandparents, which is important for dropping off Owen (that definitely worked out well for the birth). It has been an amazing blessing to have both sets of grandparents here to help out with Owen. I'm not sure what we would do without them.

I generally leave the house shortly after 10am to get here in time for Sophie's 11am feeding. I then stay for the 5pm feeding, which gets me home in time for dinner. She gets fed every 3 hours, at which point I take her temperature and change her diaper. She has started to take part of her feeding from a bottle (usually between 10-20cc), and then the rest through her feeding tube (for a total of 45cc). I have also started trying breast feeding with her, which at this point is just trying to get her acquainted with the breast. All of this takes around an hour, and then at some point I pump so she can have a constant supply of milk. So it's a pretty busy day. On the "off" time I do some reading, blogging, eating, or exercise.

Although I have had some episodes of post-partum depression, I generally feel upbeat when I am at the hospital. The nurses and doctors are very happy and caring, which helps a lot.

Plus, my boss is getting cuter every day. :-)

From LGA Arrives!