Monday, June 29, 2009

Will Crawl 4 Food

I could provide a detailed update about Penny but frankly I'm tired. And I haven't really been able to process today's information or really figured out what they were saying.


Instead let's check back in with Ned. He is thrilled that his Nanny April is back. We have started trying to find ways to trick him into crawling. Or fishing?


Saturday, June 27, 2009

Master Manipulator

One of the unusual added benefits of having a kid in the hospital is that people often volunteer to help and visit and I've been taking lots of people up on it. So thank you, everyone! Husband and I have managed to have dinner every night thanks to people who have offered to watch Ned. (I've also benefited from people bringing me food and visiting to help me entertain Penny). Penny's asleep by the time Husband comes so it gives us a chance to compare notes and catch up generally.

We are both so thankful that Penny's "illness" (or whatever you'd call dropping O2 levels when she sleeps) is clearly temporary or solvable. In fact we would never have known about it if she hadn't been checked in for the GI tests. While challenging, it is really more of a problem solving and inconvenient situation than life threatening. When I see other kids and walk by other rooms I wonder about their situations. The kids in the "clean" rooms - are they going to be okay or is this just precautionary? The families that filter in and out. We've met a few kids in the incredible playroom they have on the floor - one with a body cast (up to his waist) because of a broken femur (6 weeks - poor parents/2 year old) another with asthma. So it doesn't seem so bad on the floor. I don't think any cancer patients are on this floor but my mind and heart races toward them when I think how much worse things could be for Sweet P.

Anyway, back to tonight's installment of sort of weird parental date night (because I mean if you take away the sick kid basically that's what it was). After seeing Penny so feverish and the painful number of times she was "stuck" looking for blood on Friday night I was ready to stick around and just have Aaron bring Ned on Saturday morning. He looked into my eyes and said "Let me take care of my little girl." Heart wrenching, right? And I've been thinking of it ever since. What a wonderful dad and husband, right? Turns out he was manipulating me. He knew it was really rough on Thursday and that I probably needed some decent sleep. So he thought about it and played on my emotions. Damn, he's good. Of course he meant it too, but he's good. As an aside - between working, traveling, swine flu and sick kids it has been nice to reconnect and it reminds me why we are a good team.

I leave this blog post with a few final items:

1. No way we are leaving before Monday as I watch Penny's O2 levels drop to 81 when she rolls away from the "blow-by" oxygen. Thankfully her wonderful GI doc (who called to check in on us and insisted they NOT put back in the IV line which made her very happy) thinks we'll check out (some of the nurses call it The Hotel) regardless on Monday since it looks like this is a chronic condition.

2. We are losing our "private" room. Another kid and family are moving in. We are closer to bathroom/door but they are closer to window. I think I'd prefer window over aisle if I had a choice. Poor family if they are checking in this late at night.

3. Penny can still have fun. Taking a page from our wonderful Nanny April's book I devised a little play time for her. Take a look -

video

It required a costume change and some new linens but it was totally worth it.

Check In for the Tests; Stay for the Formula

We are heading into Day 3 of Penny's hospital stay. Here's a brief recap so you are all up to speed.

Penny came in for an endoscopy and PH probe on Thursday. A few other tests were thrown in that I can't recall. The PH probe was to be in place for 24 hours which necessitates a hospital state in a baby this young. Friday morning was her delayed gastric emptying test. Thursday morning Penny was great. I was totally freaked out when they gave her general anesthesia because she basically collapsed in my arms and it was like she had no bones or muscles. Very creepy.

We got checked into a room with another little baby girl and her parents. We hardly got to know them though because the staff started worrying that Penny (who as you all know is a snuffleupagous) might have some upper respiratory issue. Since she's been trapped inside with just her brother for weeks thanks to the rain I highly doubted she had a virus. But nose swab it was, roommate and family were transferred out and gowns, mask and gloves mandatory for everyone but Mommy, Esq.

Meanwhile we started seeing a parade of doctors. I mean it felt like House on overdrive. Geneticists, tons of different GIs, neurologists, nutritionists, pediatricians. And they all wanted to know Penny's story. I wish I had done two things before we came in - written down her meds (I thought that would be in the system) and a full complete history. It was hard to remember all the details of what happened when with a fussy little girl who no one will let sleep. I also thought it was funny how everyone asked "And her twin brother, he's...?" "Normal", I always respond and wonder if Ned realizes that average is the new gold star standard.

Seems like she does not have acid reflux but we are still waiting on the results. She does have some esophagitis which could be evidence of allergies. So now she's on EleCare formula.

She ate well (on her old formula) and I put her down for bed at 6:30. I ran out to grab some Anna's Taqueria while a volunteer literally hovered over Penny. Then the trouble started. See, when Penny falls asleep her oxygen level drops - into the low 80s and even the high 70s. Her viral test results came back negative (no surprise there). But then there were docs in and out and nurses and every time the monitor went off I had to adjust the "blow-by" oxygen (since they can't do a mask on her) to direct back to her face.

I expressed to the pediatric attending that Penny does sound a bit worse (respiratory) than at home but that I was more concerned this is how her O2 levels are at home - probably because of her adenoids. She had her 4th X-Ray (first was to make sure PH Probe was in place, the others were to check her lungs. I've told them NO MORE X-Rays. Period.) which of course showed nothing. She did start having a mild fever. My working assumption (and my dad's and the polminologists's) is that she aspirated some fluid into her lungs when she was under general anesthesia and had the breathing tube in.



Anyway, Penny got very little sleep and Mommy, Esq. got basically none. Friday they decided to go through with the delayed gastric emptying. She actually liked it because they had to swaddle her tightly and she fell asleep while I was watching her. Husband subbed in at 9 am and I ran off to work, just to leave at 3:30 to race home to relieve our back-up daycare nanny. Oh, I didn't mention that our fabulous nanny has been on vacation for two weeks?

Back at the hospital Husband also met with an army of doctors, including a pulminologist who confirmed that Penny has to stay until she can be in the 90s without the blowby oxygen when she sleeps. I figured that would be the case after my exhausting night with the monitors. She got a clean bill of health from the neurologists and also the geneticists although they are going to rule out a few rare things (zebras) that I know aren't an issue but whatever. In fact Husband said that the neurologists were very impressed with Penny when she waived good-bye to them.

The feeding team (who I hadn't met with on Thursday) are concerned that she only eats 5 solid foods (pancake, cracker, puffs, cookies, breakfast bar). Sounds like in addition to Early Intervention for occupational therapy we'll need to do a feeding therapy. Penny hasn't really be taking to the Elecare yet - I hate that it isn't pre-made. Not because of the mixing (we mix Ned's) but because she likes the thicker consistency of pre-made.

I raced back to see Penny by 7:30 (and bring stuff for Husband). My dad generously came over and stayed with Ned. She was sleeping so Husband and I went to grab food. Then we got a call that her fever had spiked (104.5) so we went back. They stuck her a bazillion times to get blood (finally from her hand) and had to do a quick catheter to get some urine. The test results? They were....negative, of course. But they started her on IV antibiotics and she basically slept all night. Husband got some rest and he didn't wake as often as I did when the O2 monitors went off.

Saturday morning I got some stuff together and brought Ned to see his sister. A whole other post is how ridiculously easy it is with one kid. He had been subdued the last couple of days but the two of them hardly interacted when I brought him. He's still been pretty quiet.



So I'm on shift Saturday and Saturday night. We're hoping that she can go home later today or tomorrow but I have a suspicion the staff will quickly learn that this is her normal O2 level and for all I know we might have to stay for her adenoids to come out. She has been pretty fussy but since she doesn't have any viruses we took her into the playroom and she enjoyed watching a bigger kid play. The funny thing is Penny seems to be dying to pull up and crawl but she can't because the IV is in her foot. Mommy, Esq. has also discovered that 10 month olds will watch TV.



Update: I heard the ENT people can't see her until Monday so we will be here until at least then. Seriously - no one can come in this weekend?

Thursday, June 25, 2009

10 Months

I wouldn't chose to remember my kids ninth month as the fussiest month ever but I have to be honest about it. Between teething and wanting to do new tricks (without success) I have a couple of frustrated infants on my hands. But we've had a few wonderful nights together when they've been all laughter and shrieks of joy.


Penny: You got your first two teeth this month. Whenever you see Mommy, Esq. she is required to immediately pick you up or you'll let her know your displeasure. We love your happy shrieks and think you've started saying "da". You are now drinking 16-20 ounces a day in your bottle but no solid food other than pancakes, crackers, breakfast bars and puffs will touch your lips. You like to peer at us from behind a raised bottle with a huge grin and are learning how to clap when Mommy, Esq. sings "When You're Happy and You Know It". We have spent lots of time at doctors appointments but you have held up very well and we are proud of you.



Ned: My sweet, Neddy Bear. I'm afraid your "Ned head" hair is almost gone. I think you are getting your 5th tooth this week! You still like to snuggle your momma but also want to crawl and standup. If only you could figure those skills out without having to work for it! You like to stand for lots of playtime at your music table. Your favorite food is whatever the newest thing is we've put on your tray.


Next month will be your first trip to Maine and I think you'll be crawling by the time you turn 11 months. Your parents promise to try to keep being patient with you both if you promise to keep giving us some of those glorious grins.

Wednesday, June 24, 2009

Father's Day Follow-up

Husband here...

Just a quick follow-up to tell everyone about my pretty great first Father's Day. My big present was getting to sleep in until about 10. Pretty awesome. (But I had wanted the life-size tattoo of the kids on my chest...maybe next year.)

But then I got a super-cute accidental gift, when I wandered down to the playroom to see Wife and Penny back-to-back, each devouring the written word in their own way:


In case you're wondering, Wife is reading some kind of fantasy novel. Penny is "reading" my T. Rowe Price investor magazine--much better than her usual choice of US Weekly, but by next month I hope to start her on Kiplingers.

Tuesday, June 23, 2009

Do They Make Baby Tweezers?

The kids' eye color has been slowly changing. They are sort of blue-hazel now as demonstrated by this ridiculous close-up of Penny's eyes. Penny, my apologies for the unibrow - I won't let you be mocked for it in elementary school like I was.

Sunday, June 21, 2009

Happy Father's Day

Happy Father's Day to a wonderful Husband and incredibly great Dad. Here are a few photos from your first 10 months of fatherhood.

Friday, June 19, 2009

Friday Fun and Randomness

Penny reads this blog. I have no other explanation for why she decide to roll from her back to her front for the first time in months this morning. And push herself backward (legs straight but it's a start). I told Husband that I hate that we have to take her off her reflux meds for the tests next week but hopefully she'll forgive us in another month or so and go back on her tummy.

Usually mealtime with Ned and Penny involves Ned SHOVELLING food into his mouth, some of which goes into his bib and we call that "second course". Penny clamps her mouth shut and goes nowhere near the table food (also refuses spoon food) unless it is a puff or cracker.

Here's how they usually look:

Thanks maybe to the teething monster (I think she may have two but she won't actually let me in there), Penny thinks bagels rock almost as much as her Auntie Stacey.

video

Just before 5 pm every night I play the game where I figure out whether I can really get out of the office or if I should just stay. After all, leaving at 5 pm means I spend an hour plus making the 15 mile commute home. But I usually try and thankfully I got there last night just in time to see these guys:

Thursday, June 18, 2009

I Didn't Mean To Lead You On

I think because I posted it on Tuesday everyone thinks today and tomorrow are the Penny testing days. But really it is next week. I did write that, I swear. But you are busy people and usually I am a prolific blogger. Except I haven't been for a million and a half reasons that are boring.

This morning I played the "what's wrong" game with Penny. Up crying at 5:30 am. Switch her into other room. Crying. Get bottle and feed her a few ounces. Crying. Change diaper. Hmmm...2 days without a poop. Give stool softener (which we give her every day). Crying. Give Tylenol. Snuggle crying baby. Baby drifting in and out of sleep on Mommy. Crying. Ah, found it - I feel a tooth. Same first one Ned cut. Same completely horrible teether.

This being "honest" Thursday I feel the need to admit that after 3 months of holding off the worry it is starting to consume me. My kids are almost 10 months old (next week) and were NOT premature babies - why no crawling? No pulling up? Okay, so Penny still has feeding issues but they both WANT to stand - but can't seem to make any connection with how to do it on their own. I have different height objects they can safely pull up on. They spend lots of time on the floor on their backs or sitting. Ned rolls around. There is no crawling. And I've resisted the comparisons when their "friends" started crawling at 6 months to start, then some at 7 months and the last at 8 months. Sure, sure it's not like Ned or Penny will be in college without having learned to walk or crawl or potty train. I just feel like there is this "intelligence" that is linked to certain milestones like crawling and telling their first joke (FWIW I don't think table food or potty training ranks up there). Stupid I know. But there you have it.

Tuesday, June 16, 2009

Thursday is for Testing: Penny Update

I wanted to give everyone a Penny update. Last week we saw the GI and nutritionist again. Penny may be eating 16-20 ounces in a bottle a day but she won't eat any finger food except crackers and puffs (girl hasn't had a vegetable in about a month) and won't eat ANY spoon food. Anyway, they confirmed that she hasn't gained any weight and still isn't getting enough calories.

So next Thursday and Friday (not this week) she will be at MGH for various tests - endoscopy, delayed gastric emptying. We'll meet with neurologists and geneticists. I don't think allergists are on the agenda. I get the impression that the GI thinks we won't find much and that her adenoids will be removed.

One hurdle at a time. I do feel like all of this is a drain on the healthcare system. We are "House" style doing tests to rule out things but I'm hesitant to remove adenoids and/or put in a feeding tube if we can try other medicinal routes.

I assumed that I would be the one with Penny overnight at the hospital but Husband assumes it will be him. Really re-enforces our team parenting approach. He's been hit with the short stick on that lately since I've been working like crazy and now gone visiting my sister and new niece.

Friday, June 12, 2009

Random Friday Thought: Word of The Day

You know how Blogger and Wordpress and all those other sites make you type in a word to confirm you aren't a spammer when you leave blog comments? Why not give us words with definitions along side so we can learn something?

Off tomorrow to see Allie and Stacey and their daughters (and Finn, too of course). It will be basically a 12 hour triplet reunion - first one since Christmas. I've got to think of ways to convince them to move back to Boston.

Wednesday, June 10, 2009

To Explain or Not To Explain

I struggle with over-explaining. When a partner/client wants to reschedule a call during a doctor's appointment for Penny or when I am trying to get out of here for bedtime I go back and forth about whether to say I'm "unavailable" or to explain - "Oh, can't, my daughter has a doctor's appointment." If I say nothing maybe the partner/client will think that I have a conflict for another client matter (which does happen). Or maybe he or she will think I'm taking too much advantage of how "flexible" our schedules can be (erratic face time is generally acceptable).

I think women tend to over-explain and frankly seem to feel a need to explain. I often type an e-mail message with a long winded explanation and then delete it. It's an impulse I'm trying to contain because there is no reason to explain myself or my conflicts. Instead I try to offer up an alternate time.

Do you suffer from this affliction? Is this a male-female divider?

Sunday, June 7, 2009

Swine Flu Update

Husband here...

So it turns out swine flu is pretty much like regular flu, only with a slightly sexed up name. Bad, but unremarkable. The worst part was the fever for the first three days, which made me keep playing this scene over in my head:



I think this was also the worst part for Wife, since I kept snickering and telling her "I need more blankets...AND fewer blankets!" Good thing she's patient, or there could have been one more swine flu fatality on the books.

Saturday, June 6, 2009

You Don't Know Anyone With Swine Flu? You Do Now

Yesterday I spent three hours with Penny at a new (fancy city) ENT.  Apparently her adenoids block 90% of her airway.  Possible adenoidectomy in our future but since her new category of medicines (histamine H2-receptor antagonist instead of the proton pump inhibitors we've been using for months) have made a difference (she ate 20 ounces yesterday!!) we might wait to see if she can start gaining weight on her own before doing the procedure. Especially since your adenoids are supposed to help your immune system.

Speaking of immune systems I really hope they haven't inherited Husband's. He left on a business trip on Thursday very early and ended up just staying in bed in the hotel. Back last night for a trip to the urgent care (which charges you an emergency room co-pay, ugh) and he has the flu - yes, H1N1. This is on top of the bronchitis he saw the doctor for last week.

So he is quarantined in the bedroom, I'm sleeping in the guestroom, he's wearing face masks and not allowed to be within more than 5 feet of the kids (that's more my rule - but dammit, they JUST got over ear infections). Our nanny is coming today so I can do work (since Friday was shot to hell) and my brother might come tomorrow so I can do grocery shopping.

In good news Ned cut his second bottom tooth and Penny learned to wave! She had been shaking her head back and forth - but in a fun, laughing way, not the refusing the bottle way she had been. Then as we left for urgent care last night she waved good-bye. She also waved good morning to her daddy from the doorway of our bedroom this morning. So stinking cute.

Here is video proof:

video

Friday, June 5, 2009

Wild Thing

We have a Wild Thing visiting.  The Wild Thing roars his terrible roar and gnashes his terrible [snaggle]tooth. 

The Wild Thing roars when he wants to crawl but doesn't know how yet. He roars when he can't quite reach a toy.  He roars when he wants to feed himself faster.  The Wild Thing makes the occasional late night appearance and once Mommy, Esq. and Husband realized it wasn't illness or teething they decided to ignore the Wild Thing. 

Don't worry, Wild Thing, even if you roar your terrible roars and gnash your terrible tooth we "love you best of all".

So, how long can we expect the Wild Thing to visit before he jumps over this 9 month developmental leap? 

Wednesday, June 3, 2009

Mommy Guilt

Apparently my post yesterday struck a chord in a couple of people. Not to wallow in it but I've been thinking about Mommy Guilt and had some random thoughts.

A friend at work noted that she was jealous and upset when her little girl wants to be comforted by her husband (who is currently taking care of her daughter at home). Another fried is upset how many bedtimes she's missed.

Here's something I read in Penelope Trunk's blog that seems so true: "If you take a man and a woman doing the same office job and the same parenting job, the man will think he’s doing a good job at parenting, but not the woman."

Would a working dad be upset if a child preferred his or her mom or would he probably think - "well, after all she is the mom?" Would a working dad be upset about missing doctor's appointments or bedtime because of client needs? Be stressed about whether the mom he left at home had enough resources not to feel overwhelmed?

I wonder if some of the problem is the expectation that we should *feel* a certain way being working moms. Shouldn't I be conflicted about being at work? Shouldn't I want to run home for bedtime or be there for doctor's visits even if client matters are pressing? Shouldn't my heart feel sore when I check on them at night while sleeping because I haven't seen them all day? I *think* society expects me to have those feelings and my guilt is more associated with not meeting that expectation - after all I know the kids are fine and husband is more than an equal parent. I'm not saying I don't have the twinge but I have the same one worrying about whether I'm a good enough lawyer.

This week and last have been the first two weeks where my job meant I was less of a parent than my husband. But since this is an ebb and flow next week I might be the one who has the more flexible schedule. Time to let the Mommy Guilt go and be a Co-Parent.

Tuesday, June 2, 2009

9 Months and At Least One Growing

Husband took the kids to their well visit with the Nanny. I've been really jammed up at work for days and I could go on and on about expectations/guilt being a working mom but I'll just give you the info:

  • Ned: 19 lbs, 2 oz; 27.5 inches. No idea on percentages but I'll guess 50% for both and check the growth charts later.
  • Penny: 13 lbs, 6 oz; 25 inches. I'm guessing 0% (or really negative I guess) for weight and 5% for height (decreasing from 10%, no surprise) means she has only gained 11 ounces in three months. Jesus - didn't realize writing about it could make me as misty-eyed as talking about it does.

Random pictures of the kids from Ohio so I can think about how cute they are when I'm trying to work.