Our Family Blog

Hairs Cut

2011-12-16T18:16:00.001-08:00

A very handsome little man got his first real haircut last night.

Halloween Weekend 2011

2011-11-01T17:50:00.001-07:00

We started Halloween Weekend with some intricate pumpkin carvings with Eliza.

Then, continued with an outing with some of our small group to Jenny's Farm Market. Pumpkin donuts and warm cider for the adults--Straw mountain for the kids. Nana was able to join us for Sunday's fun which was a nice treat.
Nora and Ryan jumped and jumped and jumped.

The big kids...

..played lots of chase.
Out to dinner afterwards and story telling by Mr. Phil

Then Monday Caitlin had a parade at school.

Then the big event: Fall Festival at church (which we almost didn't make due to some poor vehicle/car seat planning on the parts of the parents).

Nora and Ryan hogged the ball pit corner of the jump house for at least an hour. I don't have any pictures of Caitlin at the actual event b/c I wasn't really sure where she was most of the time. I think Eliza was watching her.

little dribbler

2011-10-15T17:28:00.000-07:00

Fall pictures

2011-10-14T16:46:00.001-07:00

Joy

2011-10-07T16:21:00.001-07:00

Ryan's itsy bitsy spider

2011-10-04T10:39:00.000-07:00

Ryan LOVES the camera. Anytime I get it out, he begs me to take his picture and smiles a very goofy mile for me. Here he interrupts himself to pose this smile once he realizes the camera is out.

Another one for Grandma Joan and Grandpa Bud

2011-09-29T17:16:00.001-07:00

I wanted to post these for my grandparents. They sent the kids these beautiful sweaters over a year ago and Nora and Ryan are finally fitting in them really nicely. Caitlin loves hers and has been wearing it since she got it last year (the pic below is old). Thanks again!

Visit with Grandma Joanie and Grandpa Buddy

2011-09-25T17:13:00.001-07:00

lest i have a high opinion of myself

2011-09-22T14:31:00.000-07:00

As I'm getting ready to go out to Parent's Night for Caitlin's school, she is watching me apply some make-up and comments "I don't need makeup because my face is not like that.....but I still love you anyway."

wow. I guess the numerous discussions I've had with her about the importance of our heart over our looks is really making a difference.

First soccer game

2011-09-14T17:14:00.000-07:00

Caitlin decided to try soccer this season instead of dance. She is loving it so far and meeting new friends. Somehow I managed to capture the one time she touched the ball below (she is #7). Nora and Ryan are enjoying rolling down the tiniest hill at the soccer field and are, of course, the cutest spectators.

First Day of kindergarten

2011-09-14T03:37:00.000-07:00

Caitlin's first day of school was Thursday, Sept 8. She was very excited to go to elementary school. I thought it would emotionally difficult and sad to see her with the big kids in an elementary school, but it wasn't--I was just really excited for her. I couldn't wait to pick her up and ask her one hundred questions about her day.

We were invited in for the first 15 minutes or so and it was sort of fun to see the routine. Caitlin was very serious about listening when her teacher was talking. She was very independent about the whole thing--not only was she NOT clingy with me, but she wouldn't even make eye contact. I barely got a wave out of her when it was time to go. She is kind of a big deal now, i guess.

When I picked her up, she was all smiles though. She had a hard time recounting her day other than "it was great," but was happy to answer all one hundred of my questions and it turns out: she was able to get milk for lunch with the money I gave her, she met some new friends, she went potty exactly once with no problems, she played outside, they had apples, bananas and cheese sticks for snack, lunch was not enough time to eat, she likes her teacher, they traced leaves and birds, she felt good all day, she sat at a table of all boys except her, she didn't mind that she sat at the boys table, she likes "choice time," the gym is boring but the computer room is pretty cool.

On the way home, she started going through her school bag and doing her "homework," which intrigued me, but OK. She insisted she had some papers to work on. After dinner, I opened up her school bag and found emergency forms, lunch ordering forms, fundraiser forms, health forms, transportation forms, etc. that already had "CAITLIN" written in her typical 5 year old style under the "child's name" section and "710" written under "contact number." I left most of it that way and just filled in the extra blanks.

Since school has started, she has continued to be open with me about her days--I don't know, I guess I thought she would not be interested in talking about her day with me and that I'd be totally out of touch. So, I'm happy for that. She tells me who she played with at recess and what types of things she learned each day. I'm missing the regular chats I used to have with her daycare teachers each day so I'm looking forward to conferences to hear how things are going from the teacher's end. Caitlin has been great about getting to bed earlier, picking out her clothes for the next day, and getting up and moving in the morning but it's a long week. Last week, she got a terrible headache on Friday afternoon and I wonder if the transition to full day all week long isn't just a bit too much too fast compared with the 3 days she used to have school. She'll get into the groove, I'm sure, but I'm watching her carefully. The other issue is that she doesn't want to eat breakfast and she doesn't have time to eat a full lunch (she is a VERY slow eater) so I'm hoping that improves after the initial weeks we are in.

All in all, it's going great. We also started a pretty busy soccer schedule at the same time so we are trying to manage our new schedule. It's crazy, but good crazy.

I can't get away with anything...

2011-07-30T08:06:00.000-07:00

We were on vacation at Grandma Mary's last week and we had a blast. I hope to get on and type up some of the great memories from there--but for now, I will just share this Nora-ism from last week:

I had just eaten a few Oreo's--it was about 10 minutes after I'd tucked Nora and Ryan in to bed. One of them started screaming about something, so I went down to investigate. Ryan asked me to pick him up, so I picked him up and sang him a quiet song in his ear and laid him back down. Then, Nora asked me to do the same. While I was singing quietly to her, she pulled her head back, placed both her pointer fingers on my lips and said, "I FIND CHOCOLATE.....I LOVE CHOCOLATE, MAMA." I chuckled a little and continued singing, but she persistented "I LOVE CHOCOLATE."

Busted.

Big kid undies times two.

2011-07-08T19:41:00.001-07:00

So, we decided to do it. Potty training. The dreaded. This is a process--an ongoing process. If you continue to read on, beware--there is lots of talk of pee and toilets and stuff....

We started with reading some plans that have been published online. We stocked up on trivial prizes at the dollar store and the mega store nearby--stickers, stickers, stickers, bubbles, playdoh, puzzles, figurines of our most favorite characters, etc, etc, etc--sweet drinks, salty snacks. We quarantined off the carpeted areas and left access to only our kitchen tiled area and the deck and backyard. Got 2 identical potties ready to avoid any arguments over them. And we went for it--no pull-on style diapers--directly to big kid underwear. I had been talking it up to both little ones recently and whenever I would ask Nora if she was ready to use the potty, she would say "pwetty soon, Mama, pwetty soon."

With John home for the summer and the past 2+ years of diapers, diapers, diapers, we are definitely ready to teach these guys about the potty. We were prepared for the long haul (not sure if the nanny was, but she's going with it!).

Last Saturday became "Pwetty soon"--Day 1 was no diapers and trips to the potty every 10 minutes. Easy, right. When we started, we realized how far away we were--neither had any idea that they were peeing when they peed. When we did this with our oldest, we started much younger and followed a little different philosophy, but I was still surprised at how out of touch they were with this even though I realized they are still on the younger side for potty training by today's standards. We had lots of successes on Day1 and lots of accidents and we were all tired. We were able to see that they can space out voids by HOURS and between that and their great verbal communication abilities, we were definitely convinced by the end of day 1 that they were indeed "ready." One unanticipated issue was when one would have a success and get a prize, it would break the other's heart--it would also break the older sister's heart on occasion.

My first big YAHOO moment was the first time Ryan realized he was peeing--it was day 3 and he leaped off the potty midstream and screamed "I POOP!" and we all celebrated with him. No one told him that he didn't poop, we were just thrilled that he knew he was doing something.

My next YAHOO moment was realizing that Nora could start/force herself to pee on command. That happened on day 5. If I ask her to pee, she will tense up, pee and squeek "I MAKE A PEE," and clap for herself. She is so impressed.

Over the next few days, we extended the intervals, had more successes, less accidents. On Thursday Nora had 5 successes, zero accidents and Ryan only had one accident so we celebrated LOTS. Then Friday, not the same degree of success, but still lots of successes. So, we haven't had a sustained steady progress, but definitely are seeing overall improvement. We aren't to the point where anyone is actually asking to use the potty and then following that up with an actual pee, but we are hopeful.

My expectation was that this might take a couple weeks--I think now that months is probably more reasonable, so I'm hoping by the end of the summer. So, we continue. We might actually leave the house this weekend--probably with the pull-on style diapers though :) We have seen lots of progress but still have miles to go.

Summer Fun

2011-07-08T19:07:00.001-07:00

Amy took some stunning pictures of these beautiful kiddos during a couple playdates we had this past week.

This will be the last time I post about one of my children being in the hospital

2011-04-30T13:57:00.000-07:00

What to say? Nora is now better, but was VERY sick--needing a bunch of oxygen, antibiotics, lots of rest.

The word "superinfection" was in her discharge summary, so yeah, pretty sick. Can we please be done with all of the pneumonia? Once she started to feel better, her chatterbox opened up again and she kept John and me well entertained throughout the visit. She also kept our sweet roommates entertained as well. I knew she was missing her brother when she started smacking her own leg and shouting "DOH DO DAT, YA YA." (don't do that, Ryan).

Caitlin and Ryan loved the BigBirds all throughout UMHS which shows you the detour route, so going to and from Nora's room was the highlight of each visit. Caitlin made me take a picture of her by the biggest BigBird each time we left the hospital each day. She also measured herself on the yard stick the second biggest BigBird was holding and everyday asked "am I 4 feet tall, yet?" She fully expected to grow that last 1-2 inches overnight every night and was disappointed each time, whining things like, "but I slept for a really long time last night," or "but I ate tons of healthy food yesterday."

I would like to thank Dora the Explorer for making the accomodations bearable. Thankfully UMHS is getting a new pediatric hospital in the fall--they need it. We got great, great, great care--the nurses, respiratory therapists and physicians were very competent and wonderful communicators. I'm sure the pharmacists were great too :)

The biggest thing is that Nora is well. We have some questions remaining like why did Nora have 3 pneumonias this season? 2 of which landed her in the hospital for 7+ days each time. something wrong? bad luck? We're not sure how much to pursue it. Hopefully we'll get some clarity on that.
In the meantime, we are thrilled to be all home together and all healthy. Thanks to God.

Polished

2011-04-13T03:44:00.001-07:00

This morning Caitlin and I were getting ready in the bathroom together.

C: Mom, why are you playing with your hair like that?
Me: I have a few gray hairs that I don't want to see, so I'm moving my hair around to make sure they're covered.
C: Boys are supposed to get gray hairs. They look handsome.
Me: Oh, really...Who told you that?
C: Grandpa Wayne.
Me: Ahh.
C: Don't worry, mom. Girls can polish their hair.

no luck but lots of love.

2011-04-01T17:43:00.001-07:00

I didn't get the picture of the 3 smiling together like I'd hoped. I love how this series shows off each of their personalities.
Caitlin eats up her role as the big sister--she is great at corralling them, snuggling and loving on them, play wrestling, whatever. Ryan loves any type of attention or cuddling. Nora can take 'nuggles for about 10 seconds at-a-time. Then she is done. What I'm really noticing these days is that the kids REALLY love each other. It is so fun to watch their relationships bloom.

sandbox

2011-04-01T17:14:00.000-07:00

Nora is following in Caitlin's footsteps in both her loves of sand play and sand eating as well. I know it's gross.

Every once in a while I get crafty.

2011-03-29T16:37:00.001-07:00

The crayon bits were bothering me. They were taking over the crayon bin and everyone avoids them. What are they good for anyway? Choking on perhaps? So I thought that certainly we could make something cute with them by melting them. When I googled it I felt way less crafty because clearly every other mom in the history of the world has done this before. These were the simple directions I followed. It was fun and easy to get the kids involved.
I wanted to put it up here because I will certainly do it again.

We set up stations:
-a bowl for soaking crayons so that the labels would peel off easily
-a washcloth for patting dry crayons after soaking
-a container for the labels/paper
-muffin tin

Then I let Caitlin design her new crayons by placing the bits in the muffin wells. She made one pink/purple, many mixtures, one of various yellows--whatever. Once the colors schemes were designed, we broke the crayon bits down further as best as we could by breaking them into tiny bits with our hands.

Then we popped them in a 250-300 degree oven. It took maybe 10 minutes. Just until they were soupy. The thing that I did wrong was I didn't make each muffin/crayon equal size, so the ones with less crayon bits were melted way before the ones with more. So if I did it again, I would make them all the same as much as possible. In a couple cases, most of the crayons were melted together, but one or two bits were sticking straight up. I just used a wooden craft/popsicle stick to mash them in while they were hot and that worked okay. Note--do not mix them up unless you want a bunch of brown crayon disks in the end.
Then you pop them in the freezer for 30-60 minutes and then kind of fall out after that. Take them out carefully b/c they're pretty brittle and break easily.

The end product is pretty fun. They kept Caitlin busy coloring and experimenting for a good 2 hours this afternoon. The 2 year olds liked them too. We will do this again. They'd make fun little gifts too--especially if you have cuter muffin tins or the silicone ones that come in cute shapes. But I really like the circular ones.

2 (ish) year stats

2011-03-24T11:46:00.000-07:00

A boring little blurb so that I can look back 15 years from now, when i finally get their baby books going, and write down where they were at...

Ryan:
25 pounds 8 ounces
33 inches tall
10th percentile for both for an actual 2 year old

Nora:
27 pounds 6 ounces--50th percentile for an actual 2 year old
35 inches tall--75th percentile for an actual 2 year old

Their "adjusted" bday is not until May 17th, so they aren't quite supposed to be 2 yet. We're really happy with their growth, especially considering Ryan had completely fallen off the growth chart during his hospitalization last month. He has gained 2 pounds in the past 4 weeks! amazing. No developmental delays or any other concerns. They were both really well behaved with our pediatrician.

Tiny dancers

2011-03-16T03:07:00.000-07:00

Caitlin started her 2nd tap session a couple weeks ago and this is the first time I've seen her really get excited about dance and want to do it at home. She loves it.
Don't let her slow start fool you--she's got some moves. My favorite is right near the end with the pivots and head turns-"fancy dancing."

Nana and Grandpa visit

2011-03-14T18:32:00.000-07:00

We had pancakes and bacon for breakfast and then got to spend some time with Nana ("neena" if you're Nora). Caitlin got in her first bike ride of the season with Grandpa. During this time, Nora got hold of Caitlin's tap shoes and we found out that we had a second little dancer on our hands.

Nora tapped

Ryan checked out Grandpa's watch

of course the boys gathered round the technology

Nora tapped

Everyone loved the iThing

Nora tapped

Smiled

Flower Power - Caitlin's 5th Brithday

2011-03-08T03:22:00.000-08:00

Feb 5, 2010:

I had lost my voice, so John got to be the ring leader. Caitlin had requested a garden party. First up was planting seeds and decorating pots. The snow tried to ruin the party and it succeeded in stopping a few friends from coming, sadly, but we did have a fun time despite that. We were planning on having the parents drop off the kids, but it was snowing so bad, we decided to keep the parents around and order some pizza to serve them at the last minute.

Then time for a flower pinata! (how do you get a ~ in there???)

Caitlin picked out this outfit just for her party...flower print top and green tights...just like a flower.

Just now noticing the child standing on the chair. awesome supervision on our parts, right?

Dinner was choice of PB&J or hot dog, carrot sticks and apple slices.

Dessert--dirt cups.

Caitlin had a great party. John and I had a really great time planning and hosting and are very thankful for a joyful day for our FIVE year old.

Better late than never--Christmas 2010

2011-03-06T17:36:00.000-08:00

A few random shots from Christmas. I, sadly, don't have any of the gathering with the cousins from John's side of the family. BOOO! I did add one of Cousin Soren who came over to visit Nana and Grandpa's with us to do some sledding and snowman making with Caitlin. Lots of snow and fun time outside.

Ryan: I'm sorry about the pink snowpants and purple boots. They fit you better than Nora. That's all I can say.

Christmas at Nana and Grandpas:

Ryan loves looking at these mugs my parents had made for us. Everytime we get them out, he points at the pictures and says everyone's names.

Christmas at our house when we got home on the 26th.

wohoo! the toaster nazi gets a new toaster.

Interview with Caitlin March 3, 2011

2011-03-03T10:37:00.000-08:00

Someone sent me this on Facebook:

1. What is something mom always says to you?

be patient.

2. What makes mom happy?

me being happy.

3. What makes mom sad?

me being sad.

4. How does your mom make you laugh?

tickle.

5. What was your mom like as a child?

just like me.

6. How old is your mom?

32.

7. How tall is your mom?

i don't know how many inches.

8. What is her favorite thing to do?

snuggle with her kids.

9. What does your mom do when you're not around?

lay on the couch.

10. If your mom becomes famous, what will it be for?

her kids.

11. What is your mom really good at?

taking care of her kids.

12. What is your mom not very good at?

playing basketball.

13. What does your mom do for a job?

working at the hospital. gives medicine.

14.What is your mom's favorite food?

oranges.

15.What makes you proud of your mom?

being my mommy.

16. If your mom were a cartoon character, who would she be?

Elmo.

17. What do you and your mom do together?

art projects.

18. How are you and your mom the same?

brown hair.

19. How are you and your mom different?.

Different colored skin.

20. How do you know your mom loves you?

because you first loved me. (I think she is getting me confused with Jesus)

21. What does your mom like most about your dad?

He loves her.

22. Where is your mom's favorite place to go?

to the Ypsilanti Meijer.

RSV

2011-02-23T17:56:00.001-08:00

Sunday Feb 13th I took Nora to Urgent Care--hoping to get someone to listen to her chest and look in her ear. She had been sickish for 2 weeks or so and spiked a fever the night before and got into a major coughing fit which made her puke in her crib. So I figured I'd take her in and get her checked out so that I didn't have to take the day off work (again) on Monday to do it.

We waited hours. They put the pulse oximeter on her and it read 91-92%. Hmmmm--doctor thought---she doesn't look like she's 92%---she's too pink---she's too happy---she's too playful. Let's get another pulse oximeter in here, that one must be wrong. Oh, hhmmmm, 91% again...maybe my technique is bad...get a nurse in here....another pulse oximeter....another nurse.

In all 4 separate people checked her pulse ox with 4 separate pulse oximeters. All 90-92%. Not good enough. She bought herself a chest xray and an ambulance ride to the ER. I had to sign her out "against medical advice" in order to spare an unnecessary medical expense of an ambulance ride. I drove her over to the ER myself where she was started on oxygen, iv fluids (which she didn't need), got an influenza swab and an RSV rinse. Oh, and at least an overnight stay until she could pick up her oxygen levels. The RSV was positive. Diagnosis: RSV Bronchiolitis. Probably because she's a preemie. Most 2 year olds would not be hospitalized for RSV.

She was on and off oxygen for the duration of her hospitalization. She was back to her normal self by about Tuesday, but just could not keep her pulse ox up to a reasonable level. And also, for the record, I was right--she had an ear infection--it just wasn't obvious until Tuesday. And also, Nana came and saved the week, as usual.

Typical Nora glare. As long as she is still giving dirty looks, I know she is just fine.

Meanwhile, Ryan was at home with John and Caitlin. I was getting reports that he was looking for Nora, asking for mama. He was sick, probably RSV, but was oxygenating well on Tuesday when John took him to the doc just to be sure. But, by Friday, he was very ill appearing. Our nanny called me and said she thought he wasn't right, she wasn't comfortable with the way his cough sounded all of a sudden. I thought I would come home and take him back to get check out at the pediatrician.

When I got home, he was napping--I watched him for a minute--he was breathing like 60 breaths per minute while resting, so I got him up and threw him in the car. At the doc's his pulse ox was 89-91%. Great. To the ER we went. Chest Xray showed multiple areas of pneumonia. Likely secondary to RSV. Oxygen, albuterol, ceftriaxone. Admission. Also, an ear infection.

Mercifully, they were able to get Nora and Ryan in the same room. So, while Nana stayed home with Caitlin who was such a trooper, the other 4 of us camped out at the hospital for the weekend. Ryan perked up by Saturday and was off his oxygen by Sunday.

Caitlin was reunited on Sunday after spending the night with some dear friends. Sunday also happened to be Ryan and Nora's birthday, so we spent that in the hospital.

Thanks, Botts!

Both kids were discharged Monday and transitioned to oral antibiotics. Nora after 8 days. Ryan after 3 days. Mom and Dad's diagnosis: exhaustion.

Happy 2nd Birthday, my loves. I love you both to pieces and am so glad you are on the mend. Please stay well. XOXO

Of course

2011-02-22T13:59:00.001-08:00

After not seeing Caitlin for days while the babies were in the hospital (more on that soon), I got a chance to spend an hour with her on Sunday night. After talking to her on the phone, I knew she missed me--she had said she wanted to snuggle, for me to tuck her in, she said she missed me tons--I figured she was missing all the softness and cuddles that only a mama can provide.

So when I got home, I figured I'd ask her how she wanted to spend our time together. Our conversation went like this:

Me: So, Caitlin, I've been gone most of the week. When you feel sad and you miss me when I'm at the hospital, what are some of the things you wish we could do together?

Caitlin: ummmm.....crabwalk.

So, we had crabwalk races.

The aftermath

2011-02-09T18:49:00.000-08:00

The reason I am posting all of this is just in case there is another mother of a child with short bowel syndrome experiencing gastroenteritis, post infectious diarrhea, dehydration and is frantically googling all of those terms together. Hopefully she will end up here and find a few resources. Anyway....

I was holding off on updating. Kind of waiting for some great news. I really thought he would miraculously pull through the GI bug kind of like he's miraculously pulled through many other obstacles in the past. But this was rough. Rough, Rough, Rough. For all of us.

My initial post was on a Monday night. When Ryan woke up on Tuesday he was just barely himself. He wouldn't let me put him down. He took sips of water on and off all day and I held him in my arms for the entire day. He got a fever up to 102 (Just like Nora had the 2 days before) and he did ask for banana and attempted to perk up once or twice but was just so weak. He wouldn't hold his head up or even sit up. Thankfully, the vomiting had stopped. Caitlin reminded me that I should be thankful for the opportunity to hold my usually-busy little boy all day. I guess that was the silver lining. We started giving pedialyte through his gtube as we had been instructed by his GI doc. The diarrhea set in. nuff said.

Wednesday I went to work and John stayed home. I checked in throughout the day and Ryan was eating a bit of crackers and taking sips of water. But he was still VERY lethargic. I got a call at 3pm at work and John said he was genuinely worried about Ryan not being very responsive. I asked if he thought I could finish the workday. He said no--so I knew he was truly worried. I tied up some things and left without too much delay and went straight home, grabbed Ryan and left for the ER.

Long story short, he was not severely dehydrated, but was a bit dehydrated. And he was VERY cranky. The ER doc says "I don't want you to leave here until he starts to act happy." Yeah, right, it's well past bedtime and he has diarrhea, a diaper rash and a fever. They helped us with a new plan for administering pedialyte in a nearly continuous fashion rather than a bunch at once each hour. At about 10:30pm Ryan started organizing the little 2 oz bottles of pedialyte and the doc happened to notice and said she felt comfortable with us going home. Exhale. No iv's, so that was really a miracle. We had some dear friends praying through that piece and I truly felt that unexpected peace that surpasses all understanding. Thanks, God.

AFter a bumpy couple more days, Ryan's appetite picked way up and he got happier. The pooping slowed down though the watery diarrhea was still present. He started drinking his formula again.
And then Nora threw up in the middle of the night about 4 days later and started up with diarrhea again. Hello, GI bug #2.

I almost lost my mind.

Then, of course, Ryan started in with frequent diarrhea again before he truly had a chance to recover. But the second one only lasted about 12 hours. It was just diarrhea, no fever, no change in appetite, no vomiting. We can do this! 2 GI bugs in 2 weeks.

So that was short and then he started perking up again. During the recovery, the biggest problem was that the diarrhea never went away totally. The frequency decreased to 3-4 diapers a day, but each time, he was soaked from shirt collar to socks. He'd lost 1.5 pounds and diapers were loose fitting, so we started stuffing the diapers with toilet paper in an effort to soak up the watery parts--Daddy gets the credit on that idea. That worked a little, but we were still doing 3-4 baths per day, crib changes at night, 3-4 outfits changes, sanitary loads in my washing machine. For 3 weeks. THREE! WEEKS! I was on the edge of sanity again. But, BUT, he was gaining weight--like an ounce a day back from when he was the sickest, he was happy, he was playing like his regular self. He was thirsty, hungry--had never eaten this well before.

I called our GI rehab clinic to see what the heck we could do about this diarrhea. We increased the cholestyramine up to the max dose and there was no change. We called back and we were told he is probably still sick (no, he wasn't). Or he could have small intestinal bacterial overgrowth (had no other symptoms except diarrhea, but has a lot of risk factors). They said keep letting him drink as much water as he wants. They thought we should check labs to make sure he wasn't dehydrated. I declined that b/c if you looked at the kid, you would know--he is not dehydrated, and I will not stick him with a needle to tell me that. Now, if there was a blood test they could do that would tell us what the heck was the problem with his stooling after the GI bug, that I would get! So I did some research and figured out what it was: Post-infectious diarrhea. That is my diagnosis. Ahem. :)

But what to do about the stooling? Well, besides not leaving the house and doing lots of laundry and losing lots of sleep--we did lots of research. Turns out there's not a whole lot of information out there in the medical literature for diarrhea associated with pediatric short bowel syndrome. We looked into the idea the GI doc had about bacterial overgrowth and we decided that we didn't want to get into it with the antibiotics unless we were all sure of the likelihood of that diagnosis. Even our wonderful GI doc was like "I'll start him on flagyl if you want." no thanks. We do not want.

So, what to do when medical literature is lacking? Read blogs! The short gut community is full of crazy parents like us who are scrambling to figure out something, anything to help them get to "normal." whatever that is--I can't even remember anymore.

Now, after 3 weeks of this, we tried our first approach: substituting oral rehydration solutions (like pedialyte or my wonderful homemade version from the WHO) for water. The thought is that since he has barely any colon, he was overdrinking water when he was thirsty--not able to absorb it, which is one of the colon's main funcitons. The ORS are more absorbable than water (osmolarity! chemistry!). Ryan is not really a huge fan of this stuff, but as long as it's icy cold, he'll drink it.

One day into this and we are back to 1-2 normal (for Ryan) poops per day! Amazing! He is back to his usual antics.

To celebrate, I did not even do laundry yesterday!!!!!!!!!!

We've also initiated probiotics and have a few other tricks up our sleeves that we can pull if needed--there are some reports that metamucil is helpful. another option might be prebiotics. So, we'll explore those once things calm down.

Thank you to The Short Gut News and Thriverx's amazing hydration module for pointing us in the right direction. I'm going to start getting more involved in the SBS community--these patients and parents are full of amazing experiences and information that is really difficult to find.

The dreaded...(warning: this is gross stuff)

2011-01-17T16:12:00.000-08:00

So, ever since June 2, 2009 when I brought home a tiny baby boy with short bowel syndrome, we've been taking precautions to keep him healthy--lots of hand sanitizer for everyone, no daycare, limited outings during cold and flu season, no sick contacts, blah, blah, blah. We made it through all of the winter of 2009-2010 without much more than a common cold or two (which are more serious to Ryan since he gags and pukes from a runny nose and loses weight with every cold, but anyway). I thought we were doing well this year--then Nora woke up with a weird diaper on Saturday, and I had a feeling this was it. She got sicker over the weekend--a fever up to 103, one episode of vomiting, little to eat, tired, tired, tired. We did extra hand sanitizer, gave Ryan yogurt whenever he would let us, made sure they weren't sharing cups (I'm usually pretty relaxed about this since it's a battle I couldn't win anyway, since I can't keep track of whose cup is whose and since they can reach the table and the counter now anyway). Saturday and Sunday Ryan was fine...then this morning he ralphed all over the family room. repeatedly. and then some more. and then again.

Poor Ryan. I couldn't get him to eat a thing after his morning formula (which he promptly puked after drinking a nice, solid 8 ounces). He begged for a nap but wouldn't let me leave him alone. I am MAJOR softy for a sick child. I set Nora in her room for a nap, and then snuggled in with Ryan in bed and took a little nap with him for a while before transferring him to his crib.

During naptime, John came home early from work. Not feeling well--ugh. But he rallied and helped me steam clean the family room carpet (in reality he took over and excused me from the job altogether because I almost broke it twice) and get a few things in order while the sickies slept. Then he went to take a nap.

Nora woke up strangely cheerful--then proceeded to have about 5 diapers in the next 3 hours. She did eat and drink some, so that's an improvement.

Ryan woke up ravenous. He gulped down a whole sippy cup of water--YAY! fluid! Then he coughed a little, burped a little, looked at me concerned and said "mouf" and pointed in his mouth and proceeded to puke up every ounce of water he drank--and then some. But that did not deter him. He wanted crackers, crackers and more crackers--and then: barf. More water: barf. Poor Ryan ate and puked in a nasty GI-bug cycle from naptime to bedtime. I do think he may have held on to the last couple of sips he took. He got 3 baths today (should've had 4 but once I sniffed him after he threw up on himself and decided it wasn't that bad, I wiped him down, changed his clothes and declared him good as new--I was kind of exhausted, ok?) and had 5 clothing changes.

On the plus side, as a typical male, Ryan allowed me to pamper him more than usual while he was not feeling well. I got in more cuddles with him today than I do in a typical week. He fell asleep on me three times. I totally let him. I prayed for him more today than I have in a long time. And also, the best part: he knew to eat and drink--he was hungry and thirsty! this is a big deal! in the past he's struggled with an oral aversion and been in therapy to help him eat, etc and when he's gotten sick, he's stopped eating altogether even when it was just a common cold. This time, despite all the puking, he still wanted to eat. I'm taking that as a good sign that his body is telling him when he's hungry, when he's in need of water, etc.

On the minus side, he may have kept down 1-2 ounces of fluids today. max. If he pukes tomorrow, I will put a call in to his pediatric gastroenterologist and see what she thinks. We had a plan in place for when this would happen. 45 ml of fluid per hour via his G-tube. That would replace fluids lost through diarrhea. Problem. No real fluid loss through the diarrhea at this point. He cannot keep anything in his belly, his problem is vomiting---I'm not sure the gtube will save this. I'm going to try though tonight--way less than she said, maybe just 15ccs at a time, and see if he can make it through the night without barfing some more and take it from there.

He's still perky and happy. After I laid him in bed tonight he woke up when I brought Nora in to bed and he was jumping up and down in his crib as usual. He still has big tears, so he's still hydrated as far as I know. Tomorrow will tell.

If you made it this far, would you please pray with us that the vomiting would subside. Thanks! Hopefully my next post will be an update sharing how quickly he recovered from his first GI bug :)

Cookies and snow.

2010-12-14T11:02:00.000-08:00

My ever thoughtful friend, Petra, made some awesome sugar cookies for Caitlin and sent them to her with sprinkles and homemade frosting ready to decorate. What fun! and YUM! We had a great time decorating with Eliza...

mmmm...then on to snow play

...which didn't last long. They were in and ready for hot chocolate within about 12 minutes. I'm thinking we've had plenty of sugar for the day....

Letter to Caitlin

2010-12-04T16:21:00.000-08:00

My dear Caitlin,

OH MY--how you are just growing and learning and being hilarious and smart and loving. You have survived and thrived despite all that we, as a family, have gone through over the past 2 years. You have rolled with all these punches and I am amazed at the big girl that you are and the big sister that you are. Sometimes I look at you and think about how mature you are--and have to remind myself that you are only four (almost five, but not yet! I'm not quiiiiite ready for you to be five). You take showers by yourself, pick your clothes out and dress yourself every morning, will not accept help with zippers or shoe ties--tonight we went out to dinner and you asked to go to the bathroom by yourself (reader: do not worry, I still walked her in, no one was in there, no one else was in the restaurant either).

You have such a sweet heart. You are so quick to make me feel better if you sense I am sad--hugs, words of encouragement, snuggles, asking me if you can pray for me. You look out for the cats now. You look out for your brother and sister--sometimes too much--you are not quite big enough to pick them up, but that doesn't stop you.

You are such a girly girl. Where did you get that from???? You love sparkles and pink and glitter. You wonder how I can wear gray and black so often since they are "so boring." But at the same time, you do love to play hard! You especially love to rough house with your dad and your brother. Nearly every night after dinner you ask for either a pony ride from your dad...or you ask to wrestle.

You are smart! and fiesty! and hilarious! Tonight you tried to convince me that the music we were listening to (Florence + the Machine) was making you fart. Earlier today, you told Daddy where Russia was on a world map. You probably learned it at school? I love to pick you up from school on your school days--you run up to me and shout "mommy!!" and you are finally starting to tell me more about your day. Speaking of school....kindergarten is approaching. I have no doubt you will absolutely love it. I do dread the day that you are gone while I am home. I have had a profound realization recently that we have a finite number of days together--I am working harder on enjoying these moments with you. That mostly translates into your favorite activity: Art Projects together! You LOVE art of any type. You love to do art together or alone--you love to close yourself into your art room for hours--you make a new project for your dance teacher everyweek (I mostly forget to bring them to your dance class--sorry!). Your current favorite thing is cutting out characters from coloring book pages and then gluing them onto little wooden sticks and using them as puppets.

You are soaking up everything bible-related or Jesus-related--you tell us bible stories. You sing what you call "praise and worship" songs all the time--in the car, on the toilet, at bedtime. You are so excited about our Advent activities. You could not wait to get Christmas decorations and the tree up this year and have been so helpful with getting gifts wrapped and sent out.

We sing a song a church that goes "A thankful heart prepares the way for you, My God." This has really made me think. I've tried to really focus on a spirit of thanksgiving. Everynight when I tuck you into bed, I say 3 things that I'm thankful to God for (the mundane and the grand--the simple and the profound) and then I ask you to do the same. You usually express gratitude for your friends, your teachers, your family. But tonight I challenged you to thank God for 3 things that you've never thanked Him for before. Your response was "hmmmm....I have to think wisely....I'm thankful for my picture frames. I'm thankful for my stuffed animals. I'm thankful for the whole wide world."

Thank you for keeping me grateful and for bringing such a vibrancy to our lives.

Love you,

mom

Who's the adult here?

2010-11-30T05:16:00.000-08:00

Last night I was trying to herd the kids upward to bed when Caitlin asked me about having some candy. I told her she could have a piece tomorrow because she'd already brushed her teeth. Then we got everyone in to bed and tucked in and I snuck downstairs for a few mini peanut butter cups. I parked in my bedroom to indulge in my reward while going through the Sunday paper's ads. After ripping off the shiny metallic wrapper and popping one in my mouth, my bedroom door was opened. Caitlin was coming in to let me know she was just up to go potty again and began walking toward me to give me a big hug. I set the paper down on top of the evidence and turned toward the hug she was offering. We had a short little chat. After a hug, she was off for the potty. As she got to the door she turned around and said, " Mommy?" "yes?" "I know you are having candy right now." And she turned away and went about her business and then back to bed.

We are still alive!

2010-07-07T12:30:00.000-07:00

Apologies for the 3 month long lapse there. Life, and all.....

We have been VERY busy growing and learning and managing chaos, so no worries--all is well.

I have been asked to update the blog a lot lately, so here goes.

Caitlin is a busy bee this summer--soccer clinic and tap class on Tuesdays, swimming on Saturdays, pre-K three days per week (and don't you dare call it preschool! she already graduated from preschool). I swear I will not be an overscheduler! It's just so easy to try some things out in the summer when daddy's not at work all the time. My ever-patient husband has been working with her on sight words and she loves it--John's so awesome and has made up a game to help her learn and she is really taking it all in. She continues to make us laugh every day.

Yesterday I was scratching a mosquito bite and she said "you will make that bite worse if you scratch it," I said "really? I don't think so. who told you that?" She replied "mom? I know a lot about life."

Ryan is also super busy. His main focus is language right now. He signs "all done," and "milk," (even though he doesn't drink milk). waves hello/goodbye. He is saying new words each day and pointing at everything. On June 21 I wrote down all the words he had at that point: baby, diaper, dada, bye-bye, puppy, uh-OH, cracker, go, ball, peekaboo, all done, book, up. Since then he's added: deck, click, cup, bottle, hi, kitty. (you will notice this list does not contain the word mama). We are left with only a few minor feeding issues--like he still drinks a bottle--we have given up the battle realizing that he will likely not go to college on a bottle, so hopefully that will work itself out. We've tried a few bootcamp style cold-turkey no-bottle-only-sippy-cup challenges and he will just not drink anything for days, so we waved the white flag and gave up. bottles it is. I'm still not convinced he knows how to recognize hunger/thirst yet--I think he eats now because he finally likes it and drinks because we force the issue to a point. happily though, we have transitioned to a regular kids formula instead of the fancy, schmancy prescription formula and he is drinking a regular toddler formula that I can just get at the regular people store like a regular mom--amazing! The tough part is that he still needs MAJOR distractions in order to drink--like Go, Diego, Go!--nothing else will quite do the trick. You will notice that "go" and "click" are in his language repertoire--that is no accident, thanks to Diego. So, we plug in Diego 4 times a day for 5 minutes each while Ryan chugs a 6 ounce bottle each time. Small price to pay for not using the g-tube (since April!!! can you believe it???!!!)--and any parent that's battled feeding/oral issues with a kid can probably understand why we are letting this go on like this. In my self-righteous first-time-mom days of parenting, I would've never imagined. But here we sit. happily. watching Diego and his dumb camera. oh well. CLICK!

Nora is busy on language as well, but also really working on motor skills. She easily stacks the stacking rings and is working on the shape sorter--having an awesome attention span, she works on these things for like 10-20 minutes at a time. She is walking now too--not independently, but definitely taking 10+ steps and walking across the room on occasion. She is nodding as of a few days ago and nods "yes" to every question almost. She says: uh-oh, dada, cracker, ball, kitty, cheese. she signs: more, all done, milk.

The babies play really well together when they are physically separated--like they babble back and forth and mimic each other when they are in their cribs or highchairs. But put them on the floor together and it is one brawl after another. Ryan grabs whatever he wants, regardless of who is playing with it at the time--he only wants what someone else has. Nora only plays with things that no one else is touching, but completely falls apart if anyone takes her stuff from her. She gets really attached to random tiny things and crawls around with them and then her heart is broken if something (ryan) happens to it--or if she pulls the vent cover off and throws her precious item down the vent. can we please learn our lesson on that trick yet? anyway. Ryan hits with books, hand, toys, whatever--mostly onto Nora's head. She's pretty tough though--she doesn't cry as much as I would. But mostly they are at a very precious stage right now of learning to communicate and being sweet. It's really fun to watch this phase as there are new things each day.

(ignore the screaming Ryan--he wants the camera. always.)

And away they go....

2010-03-17T03:36:00.000-07:00

the man whose voice you hear in Nora's video, is actually me + laryngitis. About 10 days ago, I took this video, she was just starting to crawl forward, needing a little incentive still. Now? forget it. she's everywhere. we've rebabyproofed as much as possible but she still finds things to get into. She's very happy chasing the kitties, now saying "diddy" as her first word even. eating finger foods...and when I say finger foods, I mean cheese (shredded, not cubed, don't even try it) and goldfish crackers. She sweetly eats the foods she's fond of and sneaks the rest of the food to the side of her tray, where it will stay until she's really done and then they start making it to the floor, piece by piece, because then all the cats will gather round and pick up the scraps. Nora is very happy and easily impresses herself--when she does something particularly noteworthy, she looks at me, raises her eyebrows, smiles and claps. stunned with her brilliance. She's not a huge fan of naps. She has 6 teeth--4 across the top and 2 on the bottom. She continues to be my early-riser, up around 6ish with me every morning, but I don't mind--we nap and nurse for about a half an hour before anyone else gets up and then she helps me get Ryan's formula made before we go wake him up.

Ryan has the cutest hop-crawl ever. It's part bunny, part seal. He's got the alternating hands down, but the legs only alternate sometimes--more often they move as one unit, hoping, to catch up with those fast arms. Learning to crawl has made a huge difference in his happiness quotient. Three days ago, he was happy in two places: crib and mommy's arms. Now, he's busy pulling CDs down from the shelf, getting into Caitlin's art supplies, pulling the blinds down, taking out the tupperware and pots and pans, chasing cats. Ryan went from being a difficult eater, needing OT, to just eating pretty much anything. He uses his hand like a rake and shovels in whatever food I put on his tray. And once he got the hang of self-feeding, he started projectile spitting his purees at us, so we totally gave up instantly. i was pretty much over spoon-feeding two babies simultaneously three times a day anyway. Ryan loves his naps and bedtime--he has a little lovely / transitional object blanket that he snuggles with. He LOVES, LOVES to laugh. If you laugh, he will laugh. If you put something on his head, he will laugh. If you play peek-a-boo, he will laugh. If you jump, he will laugh. And, he has the best laugh--strong, belly giggles--love it. I spend a lot of time each day doing dumb things to make him laugh. He has 8 teeth now. Doing better with dealing with new faces--still clingy though. Health-wise, he's doing great.

Triple threat...

2010-03-16T11:32:00.000-07:00

Ryan and Nora were in various stages of learning to crawl....one of Ryan's stages was the backwards shuffle, he got stuck a few times, and frustrated. thankfully, he is persistent and kept on until he could do it the right way.

Meet Cousin Jacob

2010-02-22T18:59:00.000-08:00

Nora and I took a 2ish day long trip to South Carolina to visit Rebecca, Don and finally meet Mr Jacob after four long months. We had a really nice time despite our trip nearly getting sabotaged by the weather--they got 5 inches of snow the night before my trip and, of course, in SC, that means all things come to a complete stop....including the power in Rebecca and Don's house. Fortunately, all was well, and the power was restored before we boarded the plane and we had lovely, warm days for our trip. We arrived Saturday, hung out, caught up, played. Sunday we spent the day at the aquarium in Charleston and then walked around Charleston, babies strapped in carriers. We all got a good workout--and I got to breathe fresh air and see the sun for the first time in a while, which was very nice. Nora was well behaved-except her usual naptime raging. She was a handful on the plane and I worked my butt off to keep her quiet during 4 separate flights, but she was great--only one total raging meltdown for the last 10-15 minutes on the first flight (God Bless that man who sat next to me and kept telling me it was OK!)

Cousins...

am I always this much taller than Rebecca? weird.

One year ago....

2010-02-20T17:26:00.000-08:00

(this was written Saturday 2-20-10...I didn't post it until Monday b/c of some issues getting the pictures up)

Feb 20, 2009 was the worst experience of my life up until that point (little did I know there would be worse things to come). The past year has been life changing to say the least--not just because we are now a family of 5, including twins, but because of the way these twins entered the world--the uncertainty, the prognoses, the NICU, the TPN, the ventilators, the surgeries, the emergencies, the NEC. John and I talked a lot over the past month or so about how this day would be---would it be Happy First Birthday, Nora and Ryan or would it be the one year anniversary of the beginning of a time of hell on earth for us? I think it ended up being somewhere in the middle.

I'm really not that sentimental of a person, but this time, this anniversary has been bringing me down. I look at my babies--growing, thriving, miraculous, and I should be celebrating how amazing these guys are--and, believe me, I am thankful and humbled and amazed and filled with gratitude--but, the memories are tough. Many of the worst times are fresh in my head as if they happened yesterday--yet they happened a lifetime ago. I am left wondering if their birthday will ever just be their birthday--a day to celebrate their time here--to celebrate how far they've come and how much they've enriched our lives as individuals. But, so far, on this first birthday, the flashbacks are casting a shadow on things unfortunately. Sure, we said Happy Birthday to them and were thrilled to talk to family and friends who called to say Happy Birthday. And we agree about the amazing strides they've made--I'm not faking the phone call happiness. I'm happy. I'm happy for them, for us. I'm thankful to God to our friends and family. But it doesn't feel quite like a birthday should for me. I feel like they are getting ripped off to some extent b/c of all the memories--they don't know it but I do. And please don't let my weirdness prevent any Happy Birthday wishes to them--I'm not falling apart about it or anything, I promise. and THANK YOU for all the birthday wishes and celebratory emails, phone calls and hugs--We all appreciate it.

So, today I planned a really fun day for John--a surprise poker night with a few buddies. Planning kept me busy and it also felt like a little bit of a redemption for John's lost birthday last year when we were praying for Ryan to turn a corner for the better after a series of bad reports from the neonatologist--we had nothing to celebrate last year. and I also blew it on Father's Day 2009 for the record. So, John is currently playing poker with some of his buddies--I hear laughter, I see friendship, I see John smiling. It is a good day. Next year we'll have a party for Nora and Ryan--hopefully there will be much healing of our spirits in between now and then.

In the meantime...here are my one-year olds. i guess. they sure don't look like one-year olds, but they are doing great things. They are both getting all over the place--Nora rolling and scooting, getting up on her knees and revving up to crawl soon, even taking a "step" with her arms here and there--Ryan moves by rotating in a circle on his belly and thrashing his legs around which sometimes throws him forward, sometimes backward--on the kitchen floor, he looks like an accomplished breakdancer.

my sunday

2010-02-01T12:35:00.000-08:00

John took Caitlin to Sesame Street Live (thank you Grandma Joanie and Grandpa Buddy!) for her birthday....I complained about not getting to go. a lot. But, I did get to spend the day with these precious gifts. Nora's just learned to clap and is pretty impressed with herself. Ryan's a seasoned clapper but has become a bit of a jumping bean in the exersaucer. enjoy!

Caitlin's birthday

2010-01-31T11:39:00.001-08:00

Thanks to so many friends and family members for making Caitlin's 4th birthday so special!

Food.

2010-01-21T17:48:00.000-08:00

Nora's doing all kinds of busy big baby activities these days. She just figured out how to feed herself little bits of cereal...

She will not take a bottle herself, but loves to steal Ryan's bottle...which he basically refuses to drink anyway....

Speaking of Ryan's bottle...we are dealing with some trouble with him accepting food and formula by mouth. We are seeing an occupational therapist weekly and she has him doing some gum brushing before we feed him solids with this crazy brush, but he likes it.
She also had me try giving him these crunchy foods, which he accepted happily once. once. and from then on, even though he can feed himself, he hasn't taken anything. She thinks he has a sensitive gag reflex and a little bit of consistensy / texture / sensory issues with food that make him not like it (the gum brushing is supposed to de-sensitize this). I'd really hoped that once he learned how to feed himself, he'd go for it, but that's not turning out to be so. It's pretty exhausting trying to transition off the gtube feeds when he won't take much by mouth. And the colds and runny noses he's been getting one right after another haven't helped much either. So, I'm looking forward to spring.

Caitlin

2010-01-12T11:27:00.001-08:00

PUTTING HER TO BED we always go back and forth about who loves who more. The other night went like this:

Me: I love you up to the moon

C: I love you up to the stars

Me: I love you past the stars

C:...(thinking)...I love you paster the stars

TWO NIGHTS AGO:

She has been imitating her Grandma Mary by singing and playing her piano at the same time. Here she was doing her own worship. I was bustling around the kitchen at the time, and didn't really hear all the words, but i did hear "JESUS IS OUR OWNER" at one point. John grabbed the camera and we got this little bit only...

She has been loving to write and draw lately and was very proud of this family drawing

Back in Business

2010-01-12T06:40:00.001-08:00

We finally got our camera back and it's working--the babes have really gotten bigger and stronger in the past 3 months of being camera-less.

We assembled our new stroller and everyone wanted to try it out....as usual, Ryan is having a ball and Nora is skeptical.

Ryan is finally loving his bath, so we are having fun taking baths around here--we got all 3 kids in the bath together yesterday, of course Caitlin is at an age where she is intentionally left out of these...

After bath...sad attempt to get a picture with all three kids in their jammies--Nora uncooperative, Ryan distracted, Caitlin lollygagging until Ryan finally fell apart, then I got a decent one with my girlies only.

..and they're still bald. and this picture totally cracks me up.

In other news, Ryan had a bunch of appts over the past week: 9 month well visit, intestinal rehab clinic, developmental clinic--all NORMAL AND IMPROVED! He's doing awesome. Nora's also doing well--got a big fat "normal" on her evaluation at the developmental clinic and we have her well child visit tomorrow, so hopefully that is uneventful as well.

NO CAMERA and brief updates

2010-01-03T18:30:00.001-08:00

there is a lack of cuteness on this blog recently because our camera is at the Cannon Repair place...i hope....and coming back to us soon. so that I don't forget: Auntie Joanie taught Ryan how to clap over Christmas and he hasn't stopped since--will get a video if I ever get my camera back b/c it's awfully cute. He is basically sitting up now too, just needs a pillow behind him for when he gets mad and throws his head back. Nora is waving and rolling both ways now--she is really motivated to feel every little thing she sees, so I think once she gets more mobile, we'll be in big trouble.

Caitlin's going back to preschool starting tomorrow, which she's been begging for since she left in the spring. Just 2 half days to start, so hopefully all is easy with this transition. We've been on a nanny hunt for the past week since the au pair situation didn't work out. In the past 3 days we interviewed 3 good candidates and hope to have this part figured out within the next couple of days. We are hoping for a less stressed 2010!

Raggedy Ann

2009-12-20T19:16:00.001-08:00

Caitlin has some kind of allergy right now. and I hope it's not what I think it is. Yesterday, at our family Christmas party, she put on a new dress (second hand--and I hadn't washed it. I swear this is not normally OK, but it was her Christmas dress and it was our party and I'd forgotten and I was choosing my battles, so she wore it before I could wash it) for Christmas and proceeded downstairs and put her fingers in some peanuts and wiped her face. About 1 minute later her face is all red, her right eye is swelling and she's itchy. grand. we load her up with benadryl, which she was all too excited about, and do the same before bedtime b/c it's stopped getting worse, but is no better. At bedtime, she is drowsy and having meltdown after meltdown--I mention to John and Caitlin both, that it's probably the benadryl making her both tired and completely out of control simultaneously, which is a lovely combination when you're three and overexcited with Christmas anyway....Caitlin replied "mama, sometimes medicine helps you feel worse." so true, my dear.

So today, she woke up with the swelling gone, but with much the same red circles on her cheeks, looking very much like my childhood Raggedy Ann doll (but cuter and a lot sassier)--kind of like a combination of this and the last picture on this page.

--I'm praying it was the foreign detergent on the dress that made her breakout (she had a shirt and tights on underneath protecting the rest of her) and not the peanuts as peanuts are her sole source of protein and fat these days. Please join me in praying our beloved peanuts are still safe.

Updates

2009-12-18T04:35:00.000-08:00

just a few minutes here as we're getting ready to leave for the Lego exhibit at Henry Ford Museum in a few (yes, I'm taking all the kids....yes, I'm insane)

RYAN: started waving 2 weeks ago, says "da-dah" all day long. at a very clingy phase right now, if he's not held, he's crying and fussing-I can sometimes put him in the highchair and he'll be happy there for a while, but if he's low to the ground he's mad. There are exactly 4 people in this world that he is comfortable with (caitlin, mom, dad, inna. favorite person = daddy, hands down) and he falls apart if anyone else gets near to him (he tolerates Nora and sometimes they even babble together, but usually he needs one of us from the 'inner circle'). about a month ago, went from loving his baby food to hating it, so we're struggling with that. Is 19 pounds 1 ounce at 7.5 months (adjusted) which is pretty much humongous and amazing. He is wearing size 12 month clothes easily right now. Still sleeping thru the night for 12 hours. Rolls from front to back faster than you can set him on his belly and will scoot a bit with his feet if you prevent him from rolling, but rests on his elbows, not his hands, so has some way to go with arm strength. Completely uninterested in rolling from back to front. Could sit up if he wanted to, but won't--he can balance if he's distracted, but gets pissed that he's not being held (remember he's a cling-on right now) and throws himself backwards. Oh, and remember how last month I posted that he had a tooth, well, he had SEVEN and he took it like a champ (four across the top and three across the bottom simultaneously). Hates baths and makes it known, so I'm still doing sponge baths b/c he doesn't seem to mind them. He's fussy right now but easy to please as long as you have available arms/hip to hold him all day :) Right now we are working on getting him off the gtube pump during the day and just running whatever food he doesn't take during the day, at night when he sleeps. Trying to train him to be hungry which he never is b/c he's used to being pump fed all the time. Praying for normal here! Whenever we go out to the hospital (sorry but that's pretty much the only place I take the poor boy) he gets lots of attention--comments on how handsome he is and how beautiful his big brown eyes are.

NORA: is a petite 16 pounds 8 ounces at 7.5 months (adjusted), which is still about the 50% percentile for her adjusted age, but the contrast in size between the two babies is really profound right now. Sitting up independently for the past 2-3 weeks and prefers that position to laying on the floor. Still will not roll in either direction and basically pouts and yells (not cries) if you put her on her belly. Also, sleeping thru the night and saying "dah-dah." It's funny how two babies can make the same sounds and it is so different to hear it from each kid. Just got her first two teeth last week (bottom two) and took it like a champ. I love the baby-with-just-two-bottom-teeth look. She has a very sweet disposition and doesn't seem to mind being walked away from or playing by herself--except when you are putting her down for a nap because she will RAGE. She squeals with delight and starts pumping her legs when she sees me after a nap or first thing in the morning and pretty much always smiles unless she's tired. She is a very happy girl. And she smells like I imagine heaven smells. I wish I could bottle it, b/c I could make millions. I spend a considerable amount of time each day inhaling the top of her head.

UPDATE: rolled back to front 6 times today (12-20-09)

Caitlin:

Holey Moley, do I love this age! She is so articulate and says the most hilarious things. She's really in to writing and drawing right now and is very good at it. She helped me make most of our christmas gift tags and all my notes to myself on my desk have a big block "CAITLIN ONEILL" written across them suddenly.

-We've been celebrating Advent by reading the Christmas Story pretty much each night and she has it memorized and "read" it to me last weekend and it was darling. She put a pink blanket over her back and announced that she was Mary with Jesus in her belly and they were travelling to "the Bethlehem world." The she switched to a brown blanket and made a little nest and said she was baby Jesus in the manger now that she travelled to "the Bethlehem world."

-The other day she was looking at neighborhood Christmas decorations and saw a nativity scene and proclaimed "There's Mary, Joseph, baby Jesus, Bambi and The Great Prince of the Forest!"

-She is very curious and is constantly asking about things like how are cars made? How do Firemen help when there's a fire? How does a police officer stop your car? What makes a police officer stop your car? What's jail like? What does "government" mean? what does "anxious" mean? recently asked about dying and what it means to be killed (thankfully John got that one! phew!) If you were a mommy with no nipples, how would you feed your babies?

-She's gotten fearful of creaks in the house at night and I've been talking to her about it and encouraging her to pray when she's scared. Yesterday she told me that when she prays when she's scared, she asks God what the noises are and he'll tell her whether it's mommy in the shower, daddy with a hammer or Inna clicking the mouse on the computer.

-She's really interested in dinosaurs now and absorbs everything on Dinosaur Train like a sponge. She has corrected me a few times re: dinosaur identification and will tell you the important things about each dinosaur like the ornithomimus are great runners, corythosaurus had a crest on their heads, velociraptors had feathers, etc.

-And finally, I want to note that she is at a huge mommy stage right now. Always requests me to put her to bed, snuggle extra with her in the morning, etc. It's been since I went back to work about 5 weeks ago, but I'm not complaining--I love the snuggles too.

Dedication

2009-12-14T11:19:00.000-08:00

Inna's amazing custard cake...mmmmmmmm.....

New Pictures

2009-11-21T13:31:00.001-08:00

Inna made these awesome pierogie-like items which I don't know how to spell, but they were wonderful. She made over 100 so we have many many in the freezer. mmmmm. not sure what happened to the pictures of Inna though--I'll try to update with those when I can.

Ryan's "mugshot"
Ryan's favorite toy:

Nora's bathtime....I never took one of her first bath, so here's my do-over on that:

Duelling exersaucers:

Ryan got a tooth today

2009-11-08T18:33:00.001-08:00

I didn't even know he was teething. He was just chewing on my hand and I felt a little razor and..sure enough! just one. lower right/middle. you can barely see it.

just wanted to log that for when i do his baby book :)

(still no hair though)

Halloween - part 2: Saturday Oct 31

2009-11-06T06:50:00.000-08:00

Snow White with a Bumble Bee, Eve.

Caitlin spent most of the evening playing all the little games. She was shy for a minute then ran around from game to game without reservation. She had a blast. I just ran around after her with the camera. Daddy stayed home with the babies.

Inna and Caitlin

Had to snap a picture of Ocean in his "Soccer Robot" costume. Iris was a cow.

Caitlin and Eliza were mesmerized by the "balloon buffoon" - later, Caitlin got a super cool giraffe balloon.

She gets her golf skills from her mama.

Halloween - part 1 on Friday, Oct 30

2009-11-06T06:38:00.001-08:00

We started the day on Friday trick-or-treating in downtown Ann Arbor with the Bott's. It was great fun. Here we have Roo, Kanga and Snow White.

Later, on Friday, Eliza and Caitlin went trick-or-treating in downtown Belleville and we had a big spaghetti dinner at our place. Then John and I went back to the Botts for some Euchre. It was a fun day.

Nora's first bites

2009-11-06T05:46:00.001-08:00

so i'm doing this for the sake of her baby calendar which has been sitting along with Ryan's in the laundry room for the past 6 months or so...I haven't taken it out of the plastic. with Caitlin, i had it out all the time and updated it daily with milestones or whatever i felt needed to be noted. you can tell I'm no longer a first time mom. So, once I get around to getting those calendars opened, i'll be going backwards thru the blog and logging everything.

So, Nora got her first solids on 11-3-09. peas. I figured she's approximately 6 months old adjusted for when she was supposed to be born, so let's go.... she actually did great, despite the look of horror she has in these pictures. She opened up and ate each bite. I only gave her about 1-2 tsp of peas since it was her first, but the next day, she ate way more and I just let her eat till she wasn't interested. I have a feeling she'll be a happy eater like the other 2 kids.

Crazy.

2009-11-03T18:06:00.000-08:00

So I took Ryan in for a weight check today. He gained another pound in the past 2 weeks--17 pounds 11 ounces. I'd sort of suspected he'd have great weight gain, because my back is hurting. I got a call from the ChIRP clinic dietician shortly thereafter....she said

"his weight gain is excessive."

seriously. I could never have imagined we'd be at the point that we are overfeeding him. amazing. a miracle. thanks, God.

So, we have been asked to decrease his caloric intake significantly. This is overwhelmingly awesome. Ryan currently gets just over 30% of his calories by bottle and the rest go in thru his G-tube. It will now be about 50-50 as we can shut off the g-tube pump for abou thalf of the night. Now we begin the process of growing less dependent on the g-tube. wow. when people ask me how long Ryan will need the gtube, I always say something like "years, but it's not really a big deal." This is because as long as that IV was off and Ryan's liver wasn't being poisoned by the IV nutrition, I didn't care about much else. And, truthfully, I didn't think it was possible to wean Ryan off the gtube. I figured he'd always be dependent on getting a ton of calories overnight via the gtube--maybe I've been conditioned to be a pessimist due to the feedback we were given while Ryan was in the NICU. Well, today, I have new hope. Something I couldn't have even prayed for b/c I just never even thought of it.

Anyway...I'm rambling, but I'm just overwhelmed with thanks for this miracle. our God is amazing.

more pictures

2009-10-28T02:10:00.000-07:00

Aunt Margaret made the kids these darling hats. I couldn't get enough of them. They arrived yesterday and within 1 hour I'd taken about a million pictures. They are soft and beautiful and Caitlin brought hers to bed with her last night, so clearly she loves it too. And also some beautiful new jammies from cousin Amy!

Outtakes from our fall photoshoot....

my girls

2009-10-22T04:54:00.000-07:00

ChIRP clinic yesterday

2009-10-22T04:48:00.000-07:00

Ryan's weight: 16 pounds 12 ounces (10th percentile for an 8 month old-actual age. above the 50th percentile for a 5 month old-adjusted age)--doing great, gaining well over the minimum just on enteral feeds (belly feeds, no iv nutrition).

Docs spent most of their time playing with Ryan, who had just woken up from a 2+ hour long nap and was in great spirits. We are going to start to work toward getting his time off the G-tube up so that when he becomes more mobile, we have less cords to deal with. He had to get blood drawn without his Broviac line and it was pretty awful, but short and he's totally over it. He did great. We don't go back until January.

Bye Bye BROVIAC

2009-10-16T05:04:00.000-07:00

We love the broviac for keeping Ryan alive and remaining infection-free. We hate the broviac for what it stood for: necrotizing enterocolitis, infection risk, loss of normalcy, crushed hopes and expectations, the looming liver failure that would happen if he remained on the intravenous nutrition long-term. not to mention it's ugly and required a ton of maintenace:

By a true miracle, Ryan is able to thrive without the intravenous nutrition which was provided by the Broviac line--this was beyond anyone's wildest imagination, truly. We are so thankful. The Broviac line came out on Tuesday October 6th after Ryan had gained great weight for the 10 days prior--it was also showing signs of clotting off, so it was perfect timing as it looked like he might need a new line anyway if he were to continue depending on it.

We took him in for surgery at 7:45 that morning. John took a 1/2 day off from school. Nora came with because her food supply (mama) went. I was really worried that Ryan would freak out since I had to shut his feeding pump off at 4:45--he did great. he was awake for his pre-op assessment and then fell asleep in John's arms at about 7:30, pacifier in mouth.

The surgery was for the removal of the Broviac, a replacement of his Gtube, which has been giving us trouble lately, and cauterization of some problematic granulation tissue around his Gtube site. All went well. Everything went so fast that they just needed to use the gas mask to get him to hold still--no breathing tube or anything. About 20 minutes after they took him back, we were called in to get him in recovery....I could hear him down the hall. He was furious, panicky, hungry but quickly calmed down with a bottle and some snuggles. We were able to bring him home a few minutes later without any trouble....Gtube site looking much nicer and leg line-less for the first time since he was 3 weeks old. After 2 days, we took the bandage off and a few days after that, the steri-strips fell off and he's left with just a small scab on his thigh. it's lovely. and his skin can breathe now that the plastic occlusive dressing is off finally.

So one week later, Ryan got his first real bath. Previous baths were just wash cloth wipes because the Broviac and it's dressing needed to stay dry at all times. And, this boy needed a bath. He was horrified at first but then settled in to the bath with the help of a toy for a distraction. pictures are a bit yellow-y looking from the bathroom lighting.

baby boy giggles

2009-10-07T04:30:00.000-07:00

we all love to hear ryan giggle. he will giggle anytime he is roughed up--such a little boy.

Broviac line came out yesterday--I want to take a picture of his plastic-less leg, but it's got a nasty looking bandage on it for the next 2 days. Next up: a real bath! I'm pretty sure he'll love it.

to brighten your day...

2009-10-01T15:37:00.000-07:00

The parents this week

2009-09-28T19:13:00.000-07:00

NEWSFLASH:

-we have watched 2 movies this week together ...and... (drumroll, please)....gone out on 2 dates. Thanks to our au pair, INNA, we are trying to get back to normal. next up: mom returns to work (I hope).

babies this week

2009-09-28T18:35:00.000-07:00

They are working on their balance, playing together and rolling. I have managed to walk away from both of them, at separate times, while they were practicing sitting (which they can only do for about a millisecond) resulting in them each faceplanting hard into the floor at full speed. I've given up on the Mother of the Year award pursuit a while ago.

gotta love those sweet sticky-outy ears of Nora's--same ones Caitlin had in her tiny baby phase.

They are both getting ready to roll back to front...spending lots of time on their sides and starting to reach out to things, so the motivation to move is beginning. Should be plenty of fun, especially with the g-tube cord attached to Ryan. I have vivid memories of Caitlin rolling around the floor at lightning fast speeds--if Ryan does the same he will surely pull that tube out while making a cocoon for himself with it. They are both tugging on Ryan's gtube all the time...it's often in Ryan's mouth. We have knocked the iv pole (currently used for the gtube feeds and pump only) over twice this week by tripping over it, which pulls hard on Ryan's gtube site, causing great pain, so that will be retiring soon and replaced with a simple backpack on the floor--hopefully easier for everyone.

Ryan's second-chance weigh in is this week, on Thursday--he fell short last time gaining only 13 grams a day when he needs to gain more like 20ish grams a day-- so we are praying for big gains and increased tolerance of his formula--however, we are stuck again, unable to increase his food until things improve. 44ml/hour is pretty good though--35 ounces a day--not sure how much of it he's absorbing, but it's a good number. we are praying and hoping for the best. It's been 4 weeks off TPN!

Caitlin this week

2009-09-28T12:55:00.001-07:00

Caitlin made this cute bear project with Inna, our au pair:

Got dressed herself as usual:
Made this beautiful art project:

Me: that's an awesome butterfly, Caitlin!

Caitlin: it's an elephant.

..and also....

2009-09-22T04:13:00.000-07:00

WE HAVE WEIGHT GAIN! not much, but Ryan gained 2 ounces over the past week, so at least he is going in the right direction--15 pounds even--still heavier than his little sister. I haven't talked to anyone from the clinic yet to see what their expectations are of him so I'm not sure if this is enough gain to get the IV line out of his leg or if they'll want more weight checks before they do this. The rice cereal has really helped us and has allowed us to increase his rate of formula again, so that's been key---hopefully we can continue to go up. (Thanks for the prayers, BEN!) Regardless, we are still waiting for a few more results from the lab tests that were drawn yesterday...

ULTRASOUND RESULTS

2009-09-21T03:54:00.000-07:00

IMPRESSION: 1. Unremarkable ultrasound of the abdomen. Normal color Doppler of the liver and spleen.

(there was no number2)

so far so good....2 weeks without TPN

2009-09-15T18:56:00.000-07:00

quick TPN-less update:

--labs last week were good. no signs or symptoms of dehydration.

--no weight loss so far.

--no weight gain either, so now we pray he can gain some weight over the next week

(still at 14 pounds 15 ounces)

--formula up to 40 ml/hr

--doctors are ordering a few tests including an abdominal ultrasound to try to figure out why Ryan's alk phos is so high--all other tests have come back normal and all his liver labs are normal now too...so I'm going out of my way to get these tests done this week.

--so a few more tests and some weight gain and then the Broviac line can come out. The line's been giving me some trouble lately (like yesterday I had to take an unexpected trip in to the surgery clinic because it seemed to be starting to clot off--they instilled some tpa in the line and it is better now)--so I want it out...like, yesterday. But of course, we want to make sure he is thriving off the TPN first and we haven't established that yet.

--to help firm up what's in his diaper, so that we can advance his feeds, we have started rice cereal. he pretty much hates it (maybe it was the princess spoon?).

..so we may have to sneak some in his bottle until he learns how to eat a bit better. we'll see.

Hi Dr. I!

2009-09-15T18:15:00.000-07:00

I did have to reassure Ryan and Nora that they were not going back to the NICU when Dr. I came to visit. We had a great time with Judy, who worked very hard leading the NICU team to save Ryan's life on 3-18-09 when he got so sick. It was a lovely reunion....complete with Ryan leaking formula all over her....but what would a day without a pump or tube malfunction be around here?

Comparison pictures...

2009-09-15T18:05:00.000-07:00

CAITLIN:

RYAN:

NORA:

Great-Great Aunt Patty--always a good sport

2009-09-15T17:55:00.000-07:00

New Twin Stroller*

2009-09-13T14:30:00.000-07:00

*Not pictured: athletic mom with the super hot bod**

**cuz she don't live here

Caitlinisms

2009-09-07T17:43:00.001-07:00

--Daddy was telling Caitlin a story about how he once tried to go cross country skiing on downhill skis and how he ended up with blisters and sore feet...

Daddy: the moral of the story is if you want to enjoy certain activities you have to be prepared....like you can't play baseball with a tennis racket.

Caitlin: and you can't play HungryHungryHippo with hippos that aren't hungry.

--Me: it's time to wash your hands

Caitlin: (ignoring me)

Me: Caitlin, it's time to wash your hands

Caitlin: I don't want to

Me: Caitlin, It's time to wash your hands

Caitlin: you're screwed up.

--Caitlin convinced me to play "Old King Cole," on Thursday, a game she made up after hearing the rhyme. I thought we should make crowns to go with the game, so we got out our paper and scissors and crayons and tape and made some sweet pink crowns. Then we went onto the deck with our crowns--Caitlin looked me up and down and said "You look like Old King Cole and I look like New King Cole."

--(by the way, the rest of the game consisted me being demoted to "old king cole's chef" and of her laying on a lounge chair on the deck barking out orders to me like "Please bring me some spaghetti, old King Cole's Chef.")

--Today at snacktime, she spontaneously announced "The Rules of the Day" as follows..word-for-word as I scribbled them down on a napkin so I'd remember...

"Number 1--treat the babies nice. Number 2--I love you. Number 3-don't ever go by hippos cause they have sharp teeth. Number 4--don't get markers on the table. Number 5--treat hungry hungry hippos nicely. Number 6--eat muffins."

All. Day. Long.

2009-09-06T07:19:00.000-07:00

..and sometimes at night. Nora has found her voice and her thumb. She is so interested in them both, that she now wakes up in the middle of the night to yodle and suck her thumb. of course, she then realizes she's hungry, so instead of sleeping through the night, she yodles, plays with her thumb, then has to nurse to get back to sleep. fun times.

Nuff said

2009-09-02T17:16:00.000-07:00

see The Nutrition Plan?

DISCONTINUE TPN.

DISCONTINUE TPN!

this is a trial basis for 3 weeks. if he gains and does OK, they will take him to the O.R. and get that nasty Broviac line OUT! Let's pray he flies!!!!

Ryan this week

2009-08-29T18:36:00.001-07:00

oh my, he is getting so big. and just keeps getting cuter and cuter. It would've been a really nice picture of Ryan and John, but I messed up. Anyway, we are back on track with the poop situation after some monkeying around with his meds and increasing his formula again. up to 35 ml/hour--this is about 28 ounces a day--we are getting there. slowly, but we are getting there. next ChIRP clinic visit is on Wednesday and I'm hoping we'll get some good news about TPN decreasing at that point.

We had our first post-NICU line infection scare this week (well, the doctors were scared...I wasn't). Ryan was acting fine but had a runny nose and low grade temp last week. His liver enzymes doubled out of the blue, so this could be indicative of either an upper respiratory virus or a smoldering line infection. I was pretty confident that he was fine, other than the runny nose, since he's so happy and busy all the time, but they ordered blood cultures anyway. So far, the cultures are negative. The liver tests are normalizing and the runny nose has also stopped. So, we think it was the virus causing the problems.

Otherwise, Ryan is really figuring out his hands but is still very much a wild man and needs a swaddle to help get to sleep, but every morning when I see him still sleeping, he's unswaddled with his hands out to the sides. Hopefully soon, he'll be less crazy and we can stop swaddling him to calm him down. He has the best belly laughs--this is such a treat for me since Caitlin never giggled at this age and Nora doesn't really either. Ryan laughs and it is so so cute--he's really got a large personality for such a small baby. He sleeps much better--now 7:30pm until about 6:30am. Always wakes up in a pool from all the fluid he gets overnight, but it doesn't phase him--he's super happy in the morning and very chatty. kind of takes the sting out of the early wake up. we are really enjoying him now---a totally different baby than the screaming maniac we brought home from the NICU 3 months ago.

***

Random thought/memory: The other day John found an old post-it note on my desk from when I was pregnant with the twins. I had written some baby boy name contenders on it from an Irish Baby Names website or something. The names were: Keon, Ronan, Fineas, Dominick, Case, Quinn. I have a faint memory of the discussion about those names. I remember liking them all (I picked them out)--we wanted to stick with an Irish name but I worried they weren't mainstream enough to match the sister's names that we had narrowed down to: Claire and Eleanor. John only liked Case, Fineas and Ronan if I remember correctly--we especially liked Fineas/Finn and Case. However, none of them actually made it into our discussion the night the babies were born. Nora was Nora without too much discussion, but we weren't sure what to name our boy. The night they were born, the neonatologist came to talk to us and gave us updates on "Nora and your son"--so I felt like we needed to name this poor boy asap. We had pretty much narrowed it down to Ryan Michael or Sean Michael--I liked them both. I was leaning toward Sean--less popular, a form of "john," equally as Irish as "Ryan." John liked "Ryan" better. I remember how when Caitlin was born and we were deciding between "Caitlin," "Sarah," and "Rachel," and it was the day after the poor girl was born and yet she was still unnamed--John came into the hospital room that morning, glowing with the glow of a first time dad after a long day and night previously and pronounced that he was quite sure she looked like a Rachel. To that, I said "no, it's Caitlin." and so it was. Recalling that, in my post-twin-whirlwind-labor-emergency-stupor, I, very clearly and intentionally gave the baby boy naming task over to John. I knew he'd do a good job (I secretly hoped he'd choose Sean). He said "I really like 'Ryan.'" And so it was.

In the end, Ryan is such a Ryan. It fits him perfectly. It means "King."

Caitlin's First Camping Trip

2009-08-25T05:56:00.000-07:00

Post from John:

This last weekend I was able to take Caitlin on her first camping trip with her friend Ocean and Ocean's Dad, my friend Phil B. We went to a campsite that Phil's parents keep an RV on for most of the summer, and they dock a pontoon boat on the lake nearby. Needless to say that camping with two very goofy three-year olds was bound to be entertaining.

Here is the kind of conversation that Phil and I would hear from the back seat:

Caitlin: No Grandma Mary is married to Grandpa Larry!

Ocean: No, Larry is a cucumber!

Both: A-ha-ha-ha-ha

Most of the time they entertained each other.

Mrs. B (Phil's Mom) was affectionately known as "Grandma" to Caitlin and Phil's Dad as "Grandpa," and they sure took good care of us--every meal, fun snacks, things to do for the kids, places to sleep etc. etc. I felt useless, but am extremely grateful for the respite. Here is a picture of the two of them with fishing poles (that Mrs. B bought) on our way to a sand dune that we all climbed (below).

Caitlin has been looking forward to tenting for years now, and she finally got her first real tenting experience. Of course, as soon as we got the tent up and mattress filled with air, Caitlin and Ocean had to go play on it--which turned into a wrestling match (pictured below).

There were a few wrestling matches over the weekend--all in good fun--but the Dads had to occasionally step in just to make sure things didn't get out of hand. Especially when they were in Mr. and Mrs. B's Rv:

Phil: (after hearing some screaming in the RV) What's going on in here?

Ocean: Caitlin was pulling my ears!

Phil: (assuming Ocean must have done something first) Well why don't you just both apologize to each other and make some better choices in the future.

Ocean: I'm sorry Caitlin.

Caitlin: Why is Ocean apologizing? He didn't do anything.

Well, at least she's honest.

Anyways, we roasted marshmallows, had campfires, went boating, climbed dunes, went fishing for crayfish, played in the park and had lots of great camp food. Caitlin especially liked the many camp treats as evidenced by the picture below (note the chocolate goatee).

My only hope was that Caitlin would leave the weekend liking the whole camping experience. So, I knew we were successful when she told me that she didn't want to go home and she wanted to stay camping. (You mean instead of competing with two crying babies at home???)

The cat in the hat

2009-08-21T17:21:00.000-07:00

...let us not forget our feline companions..who have coped amazingly well with basically being ignored for the past 6 months (sorry guys!)

More on the babies--6 months old

2009-08-21T11:25:00.000-07:00

Nora and Ryan are doing the same stuff developmentally--most obviously this week is that they found their hands to be functional parts of their bodies rather than uncontrollable parts that hit them in the face over and over. So, Nora is now sucking her thumb, which has lead to her sleeping through the night like a superstar (7:30pm ish until anytime between 6:30-8am)--no dreamfeed anymore, which means mom gets to sleep through the night too, for the first time since February. Also, doesn't need to be swaddled anymore. Much more vigorous with her kicking. Starting to try to use her abs to balance herself. Usually pretty happy still. Doesn't coo much but has more of a squeek or a gasp when she is happy--sounds like a chimpanzee when she gets mad though (usually only when she's sleepy). Full of smiles. Very easily startleable though. Hasn't had her 6 month check up yet b/c last time I took them both at the same time, I almost jumped out the window at the pediatrician's office on purpose, so I learned my lesson the hard way. Nora's appointment is next week. Ryan's appointment was last week.

Ryan is really sucking those fists and occasionally gets his thumb--he is working hard. every time I put him on his belly for tummytime, he just faceplants into the mat and works on those fists. He has gotten very grabby and we've really had a keep an eye on him b/c he'll grab at his gtube and pull it really hard or his IV line--this morning, I found him on the floor with the Broviac line (iv line) stretched so far I thought it would snap (the part that's usually at his knee level was up at his face in his hand) I scared him when I ran toward him to get him to drop it---how are we going to manage this as he gets older and more alert??

He is SO HAPPY now, really very very happy. He coos and talks and laughs and smiles all the time--until he gets sleepy, then he does a 180 degree turn in an instant into a screaming machine--but all is well once he gets in his swaddle and gets his pacifier. still bald, but starting to look like there's hope for hair finally. At his 6 month visit yesterday, he was 13 pounds 14 ounces and very well behaved--the pediatrician could not believe how "fat and happy" he is compared to when she last saw him in June. He is actually on the growth chart (5th percentile) for a fullterm 6 month old even though his adjusted age is old 3 months old. The doctor commented that his growth curve is really funny looking and nearly vertical since he's been gaining such great weight. Here he is grabbing at his toys on is playmat.

Who is this big kid?

2009-08-21T10:33:00.000-07:00

On my walk (her bikeride):

Me: Caitlin, I'm really going to miss you when you and daddy go camping

C: Mom, I don't want you to miss me, I want you to be happy

Me: I'm happy that you and daddy are going to have a great time together, but I'll still miss you

C: Well mom, I just want you to have fun with the babies, I don't want you to miss me. You'll do a great job with the babies.

New bike from Miss Kathy---THANK YOU--we've gone out everyday! She loves her new bike.

A milestone for Ryan

2009-08-17T18:56:00.001-07:00

We were soooo excited to finally see "30" for Ryan's hourly rate of formula through his G-tube. We were told by the doc's that he wouldn't get much further than 13ml/hr and here he is 2.5

times that--YIPEE!! We were thrilled at the continuous steady progress.

unfortunately, we increased to 31 ml/hr and were met with too many runny poops and cannot increase his feeds further at this point. I'm super bummed (understatement)--I was really flying high with how great he was doing and to hit this roadblock really sucks. So we are praying that things "firm up" so we can see some more progress. We've been stuck at 31 for over a week now and normally we'd been increasing every 3-4 days. His meds are getting tweaked, so hopefully that will help.

Otherwise, Ryan made some great weight gains since his last visit and they were able to decrease his calories further from the TPN iv again. He is now 13 pounds 10 ounces as of 8-14-09.

More tummy time

2009-08-17T18:46:00.000-07:00

Lots of fun with Grandmas and Grandpa

2009-08-17T18:31:00.000-07:00

Grandma Mary and Ryan:

Great-Grandpa Buddy and Ryan:
Great-Grandma Joanie and Nora:
Grandma Joanie and Caitlin did lots of art:

milestone...

2009-08-13T05:48:00.000-07:00

I started her with both hands under her, up on her elbows and by the time I got the camera, she had her right arm up--she's been doing this with some consistency for a few weeks, but not every time. But, the really good news is that she's getting really strong, pushes up with her arms and tolerates being on her tummy for much longer than before.

Crazy schedule

2009-08-08T12:55:00.000-07:00

so, we have about a gazillion things to remember to do for Ryan between 6AM, when we turn his g-tube off for the first time, and 12am when we hang up his midnight feeding bag change. Current schedule, not including regular baby stuff like naps, playtime or diaper changes, this is all just related to his medical / feeding stuff:

6AM-pump off, clean g-tube bag, flush with water, give an hour's worth of formula by bottle

7AM-hang fresh bag of formula and restart g-tube pump feeds

9AM-pump off, give an hour's worth of formula by bottle, clean g-tube site with soap and water

meds: iron, loperamide, vit D, vit A, omeprazole

10AM-restart g-tube pump feeds

12PM-pump off, clean g-tube bag, flush with water, give an hour's worth of formula by bottle

1PM-hang fresh bag of formula and restart g-tube feeds

3PM-pump off, give an hour's worth of formula by bottle, also, disconnect TPN and flush Broviac line with saline

4PM-restart g-tube feeds, take TPN out of fridge, give med: loperamide

6PM-pump off, clean g-tube bag, flush with water, give an hour's worth of formula by bottle

mix 24 hours worth of formula

7PM-hang fresh bag of formula and restart g-tube feeds

clean g-tube site with soap and water

meds: iron, loperamide, omeprazole

8PM-begin mixing TPN (takes 30-45 minutes to mix the meds, prime the line and attach all the connections)

9PM-flush Broviac iv line and begin TPN infusion

12AM-midnight tube-feed bag change with fresh formula

extra bonuses: every other Monday, I draw his blood tests off his Broviac line and deliver them immediately to the UM lab; every Wednesday we do a special scrub and cap change of his Broviac line; every Thursday we remove the dressing on his leg for his Broviac site, scrub his leg and line down with Cloroprep and place a new, clean dressing on the site.

whew! so, needless to say, we need reminders since we have the 2 girls and dinner and the phone and laundry and other "distractions" (normal life stuff) to deal with as well....so, one day (June 27th to be exact) I came home and was using the computer and all of a sudden pops up this lovely thing (very loud, i might add) and i was slightly horrified, but it does show how cute my husband is...in his corny but diligent and adorable way...

So, this alarm goes off 5 times a day to remind us to "...please turn the pump. back. on." because we'd forgotten a few too many times. so, the reminders work but they grate on you after a while. Caitlin and I did a lot of making fun of daddy for it because, well...you saw it. i had to post it on this blog so that I never forget. it always begs for a laugh and it made me smile often while John and Caitlin went on a vacation for 4 days and I was home with the twins and Nana. Nana laughs at it everytime too. Anyway, John asked Caitlin to make a reminder (because he was sick of me making fun of him) and she did, it's below and she followed John's lead almost exactly. She's definitely got the right pacing and pauses. This one comes on at 4pm now. the rest of the reminders are still John's (the video I posted above). I also get a similar reminder to turn the pump OFF throughout the day and to take the TPN out of the fridge at 4pm, it's like John never leaves the house---his weird video is always there to remind me to stay on schedule (love you honey!). The rest of the stuff we just have to try really hard to remember...speaking of, I forgot to give Ryan his 4pm loperamide...gotta fly...

chillin

2009-08-07T19:34:00.001-07:00

we are so all blessed to have daddy home all summer.

hair cut

2009-08-07T19:27:00.001-07:00

Her first haircut in the salon was Wed 8-5-09 --she was really good and very excited. But, this needed to be done since she hates having her hair pulled back these days...

big girl got a sucker/lollipop afterward

another sad attempt....

2009-08-07T19:19:00.000-07:00

so, I'm just really sure that Nora is totally opposed to the whole idea of a birth announcement. Ryan likes the idea. Same thing happened this time as last time...a whole lot of smiles from Ryan and a whole lot of trouble from Nora--I also gave up rather quickly.

grace

2009-07-26T13:04:00.000-07:00

i made bbq chicken pizza for the first time on friday and caitlin made herself a personal pizza. i set the table, rushed around and once i saw john & caitlin had come to the table and john was waiting to say grace, i quickly sat down and closed my eyes to join him in praising the good Lord for what we have and praying a blessing over our food. i opened my eyes while John was praying and saw this and couldn't contain myself:

we all have our little tricks for entertaining the babies....this is John's

2009-07-26T12:48:00.000-07:00

Good news at the ChIRP appointment

2009-07-22T19:26:00.000-07:00

ChIRP = Children's Intestinal Rehabilitation Program

I took Ryan to his appointment today and learned a lot of new things:

#1) Ryan is a whopping 11 pounds 11 ounces and has gained 47 grams per day since the last appointment. They wanted him to gain just 25-35 grams per day.

#2) This means the next prescription for TPN will be even lower--they are decreasing the TPN calories by 15%--this is considerably fewer calories than the original TPN order upon his discharge from the NICU when he was only 7 pounds--more baby steps toward getting rid of it!

#3) Ryan is doing this with only 111 kcal per kg per day (from gut + IV combined)--most short gut babies need 130-150 kcal/kg/day to achieve good weight gains. so he is doing great--all the clinic staff are thrilled with these numbers.

#4)labs look good. total bilirubin is 0.4! (it was 17 not too long ago). only thing is continued anemia and possibly some continued vitamin D deficiency despite our vit D supplement.

#5)Ryan is now able to be off the TPN for SIX HOURS PER DAY! possibly even longer if his weight gain is steady over the next few weeks. So he will be TPN-less from 3pm-9pm each day (might we even be able to go to small group as a family? we shall try! another step toward normal!!!)

#6) we are getting started doing an ethanol lock on the central line. I'm thrilled about this and have been asking about it for quite a while and Ryan is finally big enough to do it. this is a relatively new technique and hopefully will decrease Ryan's risk of a line infection.

#7)Ryan can stay awake for 6 hours in a row...though he is totally not happy doing so

#8)Ryan likes maroon 5. who knew?..really only 'Harder to Breathe'...so we played that 5 times on the way home.

uncooperative

2009-07-22T07:51:00.000-07:00

yet another attempt at a birth announcement photo. clearly, Ryan was trying, but Nora just made a joke of the whole photo shoot--stinker. some of the pictures are too cute, but nothing I can use....yet.......i'm still hoping. maybe i just need to learn how to use photoshop.

neither cooperating:
neither:
Ryan cooperating:
neither:
neither:
neither:
neither:
neither:
Ryan cooperating:
Ryan's kind of cooperating:
neither:
neither:
neither:
neither:
would've worked, but the arm got in the way...it has a mind of it's own:
neither:
neither:
neither:
neither:

cooperating, but it just didn't work out...
neither:
neither:
ugh, the pacifier! otherwise it may have been a contender:

turned into total rebellion (big sister also uncooperative with the hand):

Playing babies

2009-07-20T12:05:00.000-07:00

I gave up on trying to get a birth announcement picture for a while. it's frustrating (more on that later), so I just took this video instead....I have about 20 seconds worth of space on my camera disk, so these are short movies. 5 months old today. Caitlin and John were playing Memory in the background. I wish I could mute out myself saying "hi you guys" about 50 times, but oh well.

Ryan heart mobile

2009-07-18T06:15:00.001-07:00

ryan woke up at 5am with a dirty diaper and a HUGE smile. mid-diaper change, he saw his beloved mobile and got really excited and chatty and kicky. nothing too exciting, but I was thinking that since I can't remember very well all the things Caitlin did when she was a baby, i am going to start taking more videos of the kids, so since he was in such a good mood, I thought i'd get a quick clip. here's happy Ryan...

what are we doing these days

2009-07-17T20:21:00.000-07:00

John and Caitlin are up north on vaca and I'm watching the clock until 11:30 when I need to change Ryan's feeding bag before I can go to bed for the night....so, it's been a while since I wrote about what each one of us is up to and since I can't keep up my journaling, this is a good time...

Caitlin: is at a really fun age. wakes up every morning as asks us "what is the plan for today?" (occasionally asks "what is the dealio for today"). loves playing outside. loves loves loves her daddy. is very snuggly and always asks me if I'll snuggle with her--this makes up for her first year of life when she was not snuggly. loves "learning time"--is learning about coins and some simple math as well as working writing letters and learning numbers beyond 20. loves to tell us that we're driving too fast. loves to play in the water. still requesting Christmas songs in my car. everyday asks if it's Wednesday b/c on Wednesdays she goes to Ms. Jamie's all day to play with Eliza and she sooo loves it. still addicted to her "dissy." still sucks the first two fingers when tired. loves PBS kids website and learned how to use the mouse about 2-3 months ago. tells me that her yellow Banana Boat sunscreen face stick smells like lemonade every single time we put it on (it does not smell like lemonade). Loves her brother and sister and is an awesome helper--helps with pacifiers, diaper-fetching, bouncy bouncing, entertaining the babies. Told me that she wants another baby brother and baby sister (um, no.). Is quite sure she is going to marry Ocean (after being disappointed about not being able to marry daddy). Now every story about when she gets older starts with "when I grow up and marry Ocean..." One of those stories wisely ended like this "...I'm only going to have one baby. so that I don't have so many people to take care of." (smart kid). Also said that when she has her baby, she's going to make sure it stays in her belly a long time and gets really big so it doesn't have to have any tubes (like Ryan). Also, when she grows up, she is building her own house. but don't worry because daddy can help build her house and we can live close by. she's also just starting to become a back-rub mooch like her mom. She has changed Nora's diaper twice nearly unassisted. Still will not eat chicken nuggets or grilled cheese. Though is starting to become more adventurous with eating. Favorite foods: PB&J, ravioli, mac&cheese, olives, any fruit, cheese, and milk, milk, milk. Caitlin is very sweet and so much fun.

Nora: is really such a beautiful baby. i swear, i could stare at her all day. she is full of smiles and when she gets excited, she squeeks. her cry is more of a high pitched whine and you can tell she's a girl by the way she cries. she's really starting to watch the toys in her play gym and hold eye contact for longer periods. her head control is getting great. she's pretty sensitive to sound and sudden movements and any scare will have her in screams and tears in no time--and, oh, the pouty bottom lip is too cute. she took a bath today and was really calm throughout for the first time. very easy baby--certainly the easiest of the 3 babies I've had. Currently, goes to bed at 7:30pm, I feed her at somepoint between 11pm-12am while she's basically sleeping, then she goes back to bed until 5ish. She sleeps a lot. Takes a nap between every feed during the day for 1-2 hours at a time. only stays awake for 45 minutes or so at a time. hates the carseat, the eye doctor and going to Ryan's appointments with us.

Ryan: is much much more calm than when we first brought him home (but still has his moments). He is so handsome (takes after his daddy!). He has increased his G-tube feeds from 13mL/hr 6 weeks ago, up to 24 mL/hr now and he's doing ok tolerating things and he's getting BIG. When he is in a good mood, he is super smiley and busy. He kicks up a storm (he reminds me of Caitlin in this way) and waves his hands in delight when he smiles. He still loves his toys. He will hold eye contact for a long time and listen intently when spoken to sweetly. Sleeps solid from 8 or 9pm until 6 or 7 am. He loves his bouncy seat. He loves his IV pole and watches it fondly and smiles at it all the time. Is very chatty when he's happy--lots of "goo"s and "guh"s--very cute (Caitlin never did this, so this coo'ing is new to me). hates his sponge baths. still no hair.

All by herself, i promise

2009-07-13T16:02:00.001-07:00

Kay, for real, Caitlin drew this totally unassisted. She went outside with John after dinner tonight. John was shooting hoops and Caitlin was doing sidewalk chalk. alone. I came outside to tell John about this amazing coupon deal, yes I'm that ridiculous and he thinks so too, and I saw this obvious bunny and asked Caitlin if daddy did it. "No, mama, i did it myself. it's a bunny." obviously it's a bunny! wow! that's the first non-stick-figure she's drawn! proud mama moment. not that I don't appreciate all the more abstract art she's done until this moment....but, it's such a bunny!

THE 30 DAY SHRED

2009-07-13T15:55:00.000-07:00

Caitlin gets an hour of "screen time" each day--either computer activities or a DVD--she can choose. Today, she chose to do The 30-day Shred. Ryan watched intently the whole time. Jillian Michaels would be proud, huh?

RANDOM PICS OF THE BABES

2009-07-13T15:53:00.001-07:00

CONTRAST

2009-07-13T15:48:00.000-07:00

THEN.....4 POUNDS 14 OUNCES (4-24-09)

NOW....BIG (11ISH POUNDS)...7-9-09

Nora

2009-07-08T18:27:00.000-07:00

Our little Nora is such a big girl--she is nearly exclusively breastfeeding now and growing like a weed. She is a very happy little girl when she is awake, but she prefers to sleep...a lot. probably because she is growing so so so much. After being home for 7 weeks, she'd doubled her discharge weight and was up to 10 pounds. At discharge, she was in the 5th percentile for her adjusted age (4 pounds 14 ounces at 36weeks6days)--at her four month appointment she was 9 pounds 11 ounces, the 50th (F-I-F-T-Y!!) percentile for her adjusted age of 4-5 weeks old.

She is all smiles and seems to giggle occasionally. Now, it's about 6 weeks after their due date and she is doing all the things a normal 6 week old would do. She had an evaluation from "Early On" to assess her development due to the low birth weight and she scored normal for a 1.5-4 month old in every category. Her eyes are now healing OK--she lost a bit of her peripheral vision due to the laser surgery in her right eye, but otherwise, her left eye is resolving and she won't necessarily need glasses. When we went to our last pediatrician appointment--her 4 month well child visit--, she said Nora doesn't need to come back until her 6 month well child visit, so she is no longer being monitored for her weight gain and is on a normal baby pediatrician schedule.

unhooked

2009-06-30T19:21:00.001-07:00

Ryan is off his TPN for 4 hours each day. This adds a bit more to our chaos as I have to now disconnect him from the line then flush his Broviac line with saline and heparin at 5pm, then check his blood sugars twice while off the TPN before reconnecting him to the new TPN bag we make at 9PM. But it's cool b/c he can also be disconnected from his continuous feeds at 7pm---SOOOOO, from 7-8pm, he is totally unhooked. First time this happened was Sunday evening and he was pretty angry about it at first...

And I took him outside to watch daddy play basketball, but he wanted to come back inside. Then daddy hung out with him which made him so happy...

He got a tour of the backyard (beyond just the deck) and on his third day cycling off TPN, we went on a family walk...Nora in the Bjorn with John, Ryan in the sling with Jess and Caitlin pushing her baby Stella in the play stroller. It was all very....normal. then we played "I spy" on the deck with Caitlin, which was all kinds of hilarious--then it was 8pm and time to hook Ryan back up to his feeding tube (BOOO!). but it is nice to have him off the TPN for a short while each evening. His blood sugars are holding really steady while he's off he TPN and we're hoping he can be off for longer periods of time but I'm not sure how fast these things happen or how he'll tolerate things. He's up to 19mL/hr on his continuous feeds (was at 13 mL/hr at discharge) which is about 60% of his total calories. Bilirubin is <1

Daddy multitasking....(rocking one in the bouncy with the free foot is how we're getting by these days)

Smiles all around

2009-06-27T11:14:00.000-07:00

First the big girl...

(who, when I threatened to cancel our trip to the park yesterday when she wasn't getting into her carseat as directed, replied "that's not the worst thing that could happen.")

Then the little girl (who is also BIG now--gained 5 pounds in 2 months since being home and is now TEN POUNDS!!!)--who's been full of smiles this week...

Then the smiley boy, who also started smiling this week...

tummy time, showing off his strength...

these babes need to work on growing some hair!

The Life of Ryan

2009-06-23T09:31:00.001-07:00

Here's the low down on Ryan's business---he is not a happy camper, generally. Right after his reanastomosis surgery he figured out hungry in a big way. and he is hungry. and mad. and we're stuck giving him continuous feeds into his g-tube (up to 17 mL/hr with plans to go up to 18 tomorrow!) which doesn't satisfy his desire to have a full belly. He LOVES his omeprazole and loperamide that he gets to drink by mouth--like dessert....you give him a little drop and he shoves his hands in his mouth and rubs the med all over his face as if to bathe in it it's so good. it's adorable (and sad). He doesn't cry like a normal baby, he ROARS--like if a lion cried, it would sound like Ryan when he cries--it is deep and loud and scary. He is still super strong--holds his head up like no problem--looks all around the room.

otherwise--he got his g-tube changed out to a button 2 weeks ago and though it looks better and is easier to maintain, his body doesn't like it as much and we are trying to come up with ways to deal with a reaction he's having to the button--otherwise, his Broviac line is still looking good despite it being placed directly in the poop-path.

A few things make Ryan happy:

---this particular hold (which is causing his right side of his head to be flat)
--sucking on things (sometimes--sometimes he just gets even more furious like he knows we're trying to pacify him and he's hungry darnit and knows when he has a bottle and when we are trying to give him a pacifier)--here he caught his thumb..
-being outside (plenty of times, he's raged and when we take him outside, he settles right down and falls asleep)
--long conversations with nana

-and this stupid mobile which he will stare at for a long while (and which made me cry the 3rd day after he was home b/c I could not make him happy, but if i placed him in his pack-n-play he would happily stare at the mobile for an hour---he likes me now i think though)

oh, and of course his little 17mL bottles that he can take every 3 hours make him happy for the 12 seconds it takes him to drink them. then he is mad again. but it is getting better...the past few days he's had more moments of contentment. he smiled at me ON PURPOSE (yay! finally!) yesterday and today and seems to be comforted by me, finally. the only good thing about him having continuous feeds is that he sleeps through the night (of course, we don't because there's Nora).

Doesn't love the swing, but will occasionally sit there and look around the room--also like to sit in the bouncy seat and stare at his IV pole. Ryan is great at eye-contact and tracking objects. When he is calm, he'll just look at me for so long.

This is what cute looks like (also, miniature version of John i think):

The babies don't seem to know each other--I keep placing them next to each other when I have the chance but one or the other seems to freak out (here Nora was in between shrieks).

update: after CHIRP clinic today--9 pounds, AND we are going to let him be TPN-free for 4 hours each day! (assuming his blood sugars are OK while off the TPN)

the barbie talk

2009-06-16T17:01:00.000-07:00

ever since my women's studies class on pop culture, a Barbie fan i am not. Caitlin has a few barbie items she's received as gifts and I've always referred to Barbie as "the girl," in an effort to not acknowledge Barbie formally in my house. Tonight Caitlin was getting ready for bed and said "I'm going to wear this (generic-looking) barrette in my hair tomorrow so I can be pretty." As I was thinking of something to say to that, she took out her "girl" toothbrush (Barbie) and said "her name is Barbie, mom." so, I figured I'd explain why I don't care for Barbie--three-year-old style. conversation as follows as we were walking downstairs:

Me: I don't like that Barbie tells us that it's important to look a certain way. what's important is what's on the inside--that we are nice and we treat other people well. does that make sense?

C:yes

we then approached daddy and I asked C to tell daddy what we'd talked about...my sneaky method of reinforcing the lesson

C: the important thing is that I'm cute

sigh. so I asked daddy to explain why I don't like Barbie again. Daddy went into a very long sermon on women's self-image and self-respect and had to be stopped a few times by me giving him signals from across the room as he was dangerously close to highlighting obesity in a way that would only make this curious and talkative 3 year old sensitive to other people's sizes--anyway, his point was the same as mine:Barbie thinks what you look like is important-he mentioned being a good person and being smart as more desirable characteristics.

Me: Caitlin, what did daddy say?

C: Barbie is not smart...but I like her because she is cute.

oh well.