Wednesday, July 29, 2009

Beauty and the Brute

Having a boy and a girl the same age can provide for interesting male/female comparisons.

Lately we've noticed that Ned is about the gross motor skills - brute strength. Moving through the playroom like a tornado, pulling toys of shelves, picking up and discarding books from the book bin and crawling around with his blankie in his mouth. He'll climb up when Penny is playing at the music table and pry her hands off so he can move in and take over solo.

Penny is more delecate and has better fine motor skills - like softly banging two toys together, learning to put toys "in" to something - include the little "bugs" into the flowers in this new toy I picked up in Target (one of our only "girlie" toys). She likes to hand toys to you (and then take them back of course) and will work long and hard to pick up a tiny scrap off the floor. Ned gives up pretty easily and would rather just flip the toy over.

I don't know if it is a male/female thing or if Penny doesn't have the strength for gross motor skills so she is compensating with fine motor and lots of babbling. Do you find boys and girls have different play skills?

Thought of the Night

This isn't bedtime. This is Bedlam.

Sunday, July 26, 2009

11 Months Old

The tykes made it through their 10th month - and Husband and Mommy, Esq. did too. In some ways it was easier than the 9th month since Ned stopped whining 24/7 because he learned to crawl and pull up. But of course this month included two hospital stays for my Sweet P. The 10th month also marked the highest water point in our constant "juggling" of two careers with two kids.

As you can see from this chair photo we gave the kids haircuts. Unfortunately Ned's makes him look a bit like Hitler and Penny's bangs are totally my fault but I think she looks like a pixie.

Dear Ned, We are so happy you learned to crawl and as soon as you figured it out you have been into everything but don't worry, Daddy has put up gates to protect you...and his electronics. You wake up early (5:30 am) every day chattering around and looking forward to trying out your new skills. Sometimes you try too hard to play in Penny's space but I know you can't wait for her to join you in moving around.

Dear Penny, You have been incredibly strong and brave during the hospital stays and million doctors appointments. I know you don't like to have the tape and oxygen on all the time and hopefully we can figure something out for you soon. You desperately want to crawl but refuse to spend any time on your belly so I don't think that is going to work out so well for you. Grandma and Daddy told me you said "mama" but I haven't heard it yet. Ds, Bs, Ws and Ms are always at the tip of your tongue even if food doesn't make its way in so often. You have become my little girl - holding your hands up every time you spy me. It's nice being your mom.

Friday, July 24, 2009

Lounge Lizard, MV Style

What was Ned doing while Penny was in the hospital on Thursday/Friday? Practicing for our trip to Martha's Vineyard.



Penny was released tonight. It's been a tough week and despite the kind comments I have not been keeping it together nearly as well as last time. Husband and I are out of sync on some fundamental childcare items (namely who, when and how to ask for outside help). The doctors never really figured out a system to help deliver oxygen to her at night (beyond the nasal cannula) so her monitor will be going off like crazy and we have to suction her nose, reposition her, etc. to try to keep her oxygen levels up. It's just all tougher when you are out of sync with your spouse. We both also feel like we have to show more dedication at work since they've been flexible about Penny and our MV vacation will take a hit accordingly - both probably working some while juggling childcare without any nanny.

Checking Back Into Hotel California

On Thursday I did call the pulmonologist about the desaturation that was keeping us up all night. As soon as the nurse called back (just as I had reached my office in Boston) and told me we should take Penny to be evaluated at the ER I just knew we'd end up checking back in to the hospital. I wish I had packed accordingly. Also going back to get Penny made it my third trip into Boston before noon.

The problem is she is desaturating and needs the "blow-by" oxygen even with the nasal cannula delivering oxygen. When pressed for a "how can we manage this at home so we can be released", I was told that they didn't know yet. Since today is Friday I pretty much have no hope that we'll get released until after the weekend. Penny has the adenovirus so we can't take her in the playroom*. In the plus column that means we got our own room (with an awesome view of the city). Since someone else had to deal with the pesky monitor and fixing the blow-by all night I actually got some rest. Husband comes to take over at 11 am because I figured I might go crazy trying to entertain an almost 11 month old in a bed all day.

This is our last weekend at home before we go to Martha's Vineyard (completely paid for) and I have a list a mile long. We are probably going to have my mother-in-law fly in so we can better manage caring for two kids in separate locations while trying to get organized for our trip. Let's not even talk about the work piling up in my office.

I know she'll be fine - we just have to get her over this virus/cold and if we can prove she does okay just on the nasal cannula they will let us go home.


*Husband just told me he got pink-eye from the virus she must have passed on - a common side effect. Penny tought it was the funniest thing in the world for her to touch all my teeth yesterday while we were in the ER. I wonder what I'm going to catch?

Thursday, July 23, 2009

Stupid Growth Chart

As appears to be protocol at every doctor's appointment, they took Penny's height and weight at her allergist appointment which turned out to be a total waste of time. She has to be off her allergy stimulant for 7 days or it interferes with skin tests. Wish someone had told me that - now nothing is available until the end of August. Of course every scale is different but if you were wondering - here is how Penny's current weight looks on the growth chart. I wish I could have found a program that lets me enter multiple points of data so I can show you the picture over the last 10+ months but maybe I'll do it by hand and post it at their year birthday.

The red circles show her height and weight - I guess it is no surprise she fell off the scale on her height too. You can click on it to make it bigger.


I should also mention that she probably hasn't gained any weight because she has a bad cold and now an ear infection - typical end product of a cold when you have large adenoids. She has pretty much only been eating the snot that drips down her face - okay, so it's a river of snot that's impossible to keep up on. And her monitor shows she desaturates all night long because she is breathing through her mouth and the O2 comes in through a nasal cannula. Husband and I haven't been getting much sleep.

I just wanted to bitch. Thanks for listening.

Wednesday, July 22, 2009

Most Awesome Thing About Twins

Sometime during this 10th month it snuck up on me.

Mommy's Cell Phone Is Way Better Than Our Toys

It really kicked in when Ned started crawling.

Mommy, He Stole My Pacifier!

They even do it when friends visit - like August from Sweden.

Peek-a-Boo
Playing together.

Monday, July 20, 2009

Playroom Bully

We've had several sets of visitors over the past week and kids with fevers (and the snot monster is back) so I can't put up a real post today. I did want to ask moms out there what they have done with "playroom bullies". Ned can crawl and pull up and cruise around and his favorite place to be is in Penny's face. She tries to push him away but he's much bigger than she is. Any advice?

Friday, July 17, 2009

Babytalk

Ned has been grumpy this morning. Seemed like he wanted to use the computer, so I figured I'd let him do a guest post. Here's Ned's first-ever blog post:

NHzajhj y gx xasq cxcdxcd
VCd';pl.
kok

z sammnakjab


Then Penny wanted to blog tf oo cxxzk
:-
'][
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t tp://www.dispatch.com/live/content/local_news/stories/2009/07/10/speeder.html=.]
]\ >"
][

Eh, I've seen better posts.

Wednesday, July 15, 2009

Just Before Bathtime

Need I say more?

My suggested caption for this photo is "Mommy, Esq. Thinks She Can Go Make Coffee While Ned Tries to Feed Himself Yogurt".



Any other ideas?

Sunday, July 12, 2009

Top 10 Hospital Lessons

Many moms of multiples spend time at the hospital on the front end – in the NICU. Parents aren’t allowed to stay overnight with their kids. It’s very different when you take an infant/toddler to the hospital. Even if you think (as we did) that you are going in for one night the hospital visit can turn into the Hotel California. Here are a few lessons we learned during Penny’s 6 days in the hospital.

1. Information Overload. Bring your child’s “history” if this is a long-term condition. Also bring a written list of existing medicines and when they are taken. I wish we had written out Penny’s history of her eating issues before I went in. Many nurses and doctors will be asking questions and giving instructions and it is hard to take notes or even remember what they are telling you. Bring a spiral notebook and pen that is attached. Respectfully request all consults happen in the hallway if possible and ask your child’s nurse to watch her in the room. Most likely if you have twins or another kid only one parent will be with the hospitalized child at a time and you need good notes to do hand off to your spouse. Husband and I would synthesize the information gleaned during the day and ask questions that we would write down to ask the doctors the following day.



2. Pacifiers. I always have laughed when I hear parents say “little [Johnnie] just won’t take a pacifier” – like somehow that makes [Johnnie] a better baby. I love that Penny is a complete pacifier addict. With the pacifier in her mouth she didn’t mouth the toys in the playroom (how often are those really cleaned?). While a pacifier will not soothe a hysterical baby being stuck with a needle once she started to calm down it did the rest of the work for us. I was able to hold a calm baby instead of a trying to calm a screaming baby. Even if your kid isn’t a “pacifier” baby bring it along because you might be surprised.

3. Routine. Try to keep your child’s route in place. After the first two days we started asking doctors and nurses to wait until Penny’s nap was over. I put a sign up asking them to close the damn door in the middle of the night when staff would come in to check on her or her roommate. We were polite but firm. Taking her temperature every 4 hrs? Give me a break – wait until her nap is over. The only thing we had her woken up for at night was an emergency x-Ray (post-aspiration) and for her antibiotics. We fed her on her “home” schedule and napped her pretty much on the same but she did end up keeping a short third nap because some of the daytime naps were attenuated thanks to roommates/noises. We asked to bath her post-dinner feeding as we do at home and they were okay with that provided we did it ourselves.



4. Television. Penny and Ned don’t watch TV. I’m not a purist. No one loves TV more than I do. It just isn’t part of our routine. But when is the last time you spent 24 hours with your kid in the same room? Bring on the TV! Penny “rested” every day for about 20-30 mins watching cartoons on PBS. I could catch up on work Blackberry emails or just breathe for a few minutes. But I honestly didn’t understand why Penny’s roommates would have the TV on 24/7 – no joke.



5. Food. When is that tray of hospital food arriving? Right – not on a set schedule and whatever you ordered your kid won’t eat. So bring your own food – snacks, baby food, whatever. We had crackers and cereal bars – whatever we thought Penny would eat. And since highchairs weren’t always an option be prepared to put your kid on a towel to feed him or her so the bed linens aren’t ruined. Food for parents is tough too – I recommend grabbing food while your kid sleeps (yes, you can leave them) or if there are “volunteers” who will watch your child while you run to the cafeteria. Other supplies that are good to have on hand = washable bib, your own nipples (Penny rejected the latex kind provided), camera, soft clothes without many snaps for your kid (Penny mostly wore a longsleeve white onsie and soft white pants they provided – the hospital gowns were way too big – and socks. Sleep sacks aren’t an option with the sat probe on her toe).

6. Keeping Occupied. A friend mentioned that having a baby in the hospital is like a long plan trip. You are trying to keep them occupied so as not to disturb other “passengers”. There is lots of walking up and down the hallways, trips into the playroom (if you are lucky enough to have one). We brought a few toys and borrowed others from the playroom. Waterplay was one thing we did just to occupy her. I am very thankful Penny doesn’t crawl yet – seeing Ned in action makes me realize how much harder it would have been. We were even told we could take her on a walk but of course this was the month that Boston considered building an Ark so weather prohibited outings. You should also take advantage of any activities they offer – our floor had music and pet “therapy”. You spend a lot of time with your kid in their “crib” – bottles, play, sleeping – I was so ready to say good-bye to the 20+ hrs we spent in one room.



7. Roommates. Be prepared to deal with other families – large families that stay in the same room with you. There will be small talk and trying to be subtle questions about what is wrong with your child. It is hard if there is another baby and not on the same sleep schedule as your child or if the roommate/family likes to watch TV loudly. And talk on their cell phone at midnights. No, I’m not kidding. I ended up bringing headphones and watching DVDs on my laptop and listened to classical music on Pandora. Penny slept like a rock most nights.

8. Really getting to know your kids. I haven’t taken a vacation with my kids since I returned to work so this was the first time in a long time that I spent a lot of time with one of my kids. And just special Mom-Penny time to boot! After watching Penny interact with nurses, doctors and staff; seeing her concentrate on toys; and having her look at me in the eyes and shout “babble” (including her new word “dada”) – I am impressed with what a smart little girl I have. One who is social and interactive. In short, I found the time with Penny while tough from a medical standpoint very reassuring.


9. Everything is negotiable. Don’t be afraid to ask doctors/nurses to respect naptime. When Penny’s IV (in her foot, ugh) was bent and they took it out I lobbied hard to switch her to oral antibiotics so she could actually stand up (held) every now and again. I put up a sign asking nurses to shut the door at night when they came in and out so Penny and I didn’t have to listen to the global monitor right outside our room that went off any time any child had an issue (which could be the O2 dropping, heart rate up, toe probe falls off…the list is endless). Generally I waited for the nurses to check in but sometimes Penny and I would loiter by the nurses station for a question but I never disturbed our nurse if she was with another patient. I also just sent over some fruit and chocolates as a thank you.

10. Resilience. I am beyond impressed with Penny’s resilience. I have to admit I think Ned would not have handled it as well. There were times that nurses were “chasing” Penny’s vein with the needle for blood draws and she’d be screaming her head off. Or when they suctioned out her nose (see above). Then we’d sit her up and I’d give her a hug and she’d smile at the nurse. Amazing.

Saturday, July 11, 2009

Summer Spontaneity

Like most infant twin families we are on a Schedule. The Schedule is sacrosanct - especially when one of the kids naps on oxygen. But the kids are napping a little less (more on that to come) so we feel like we have a few hours here and there to Do Things. According to Husband, Mommy, Esq. can overschedule that free time but we have had some spontaneous moments.

Last Sunday the kids were cracking up over a video Husband was showing them of monkeys eating poop. Since we had an as-of-yet unused family membership to the Stone Zoo we said "let's go there!" The kids lasted about an hour and a half - perfect for the rather small zoo. The more active animals were interesting - like the flamingos - but the kids pretty much just sat in their stroller and Ned drank an entire straw sippy cup of water. Maybe inspired by the camel-like Zebu?



And last night Husband moved their highchairs to the back strip of lawn and the kids dined al fresco.


Wednesday, July 8, 2009

Advertising, Electricity, and Child Development Schemes

Husband here...

I love Google AdSense. Not for the money, of course. At current rates, it will be another 4 years before Mommy, Esq. gets enough clicks racked up to get a check from Google.

No, I love it for the awesome ideas it spawns. Like this one that showed up for reasons that are obscure to me:

How to make electricity
Don't pay for electricity,
you can make it simple
& cheap at home.
Power4home.com

Aside from the brilliant poetic quality of the copy, it gives me great ideas about how to make sure Ned and Penny grow up big and strong...and generate free electricity for the Esq. household at the same time. Anyone remember the Wheel of Pain from Conan the Barbarian?

Tuesday, July 7, 2009

Buying for Babyproofing

Husband here...

Wife, Esq. has vetoed my revolutionary new childrearing idea: house-proofing the babies...something about giant plastic hamster balls making the diapers hard to change.

So, instead we have to babyproof.

I think the key item in the short term is one of those kid jails. If we get two and assemble them together, we can pretty much corral off the whole middle of the play room. Plenty of room for both of them to lift weights, play the harmonica, rattle their sippy cups against the bars, and fashion shivs.

I like the looks of this one:

Anyone have anything positive or negative to say about this one, or any alternate recommendations?

Batten Down the Hatches

It's time to baby proof.

video

He can get himself into a sitting position but he cannot pull himself up yet. One baby step at a time...

Sunday, July 5, 2009

Vampire Baby

Ned's new expression as demonstrated below. I can't tell if he does it to show off his 5 (almost 6 - the top left middle tooth is coming in) teeth or because he wants to suck my blood. He has become a "biter". It's gentle but we have been telling him "no" firmly and putting him aside if he bites (usually on my shoulder, some times a toe). One of those gestures that seems so cute but could turn Ned into vampire baby.

Friday, July 3, 2009

The Motherlode of Penny Updates

Recap: Last Thursday Penny went in for an endoscopy and overnight pH probe (needs 24 hours of data) and a delayed gastric emptying test the following morning. She aspirated either while under general anesthesia or when she first woke up and I fed her a bottle. During her naps and nighttime sleep on Thursday they discovered her oxygen saturation levels were dipping - down into the 80s and sometimes as low as the 70s. Friday night she had a very high fever of 104.5 degrees. We cleared up the pneumonia symptoms with a course of antibiotics (that she will finish tomorrow) but the O2 levels remained low. We've met with genetics, feeding specialists, neurology, GI, pediatrics, pulmonology. The only specialist we never saw but are doing out-patient is be immunology/allergy. We were finally released on Wednesday and Penny is on oxygen for naps and nighttime but she otherwise seems healthy to us.

What did all the tests show?

GI: The pH probe showed she does have acid reflux. A normal acid level is 4% and hers was around 14% during certain parts of the day (note: she was off her acid reflux meds for 4 days before the test). Recommendations: Pepcid isn't as effective as PPIs (and kids quickly get a tolerance) so we are doing 3.25 ml of a PPI (omeprazole) twice a day and alternating it with twice a day 1 ml of pepcid. We do not know the results of the delayed gastric emptying test (but I think it will be negative). Also a couple of months ago she had a "normal" barium swallow test. The endoscopy showed inflammation - which can be caused solely by acid reflux or also by allergies. The lower part of the esophagus showed possible signs of a fungal infection but they don't think it was active so no treatment needed (thrush, which Ned had in his mouth when he was breastfed, is the sort of fungus you find). Her colon sample was completely normal. Her doudenum (the first section of the small intestine) showed inflammation but not a general inflammation that they normally see with kids with allergy. In fact, this has stumped them a little - it makes it look like she has a peptic ulcer, but they are confident she doesn't because they have never seen this in kids. The pathologist said if he didn't know the sample was from an infant he would think it was from a 50 year old with a pepcid ulcer. They are sending the labs to another pathologist for a second opinion. Since the treatment would be a PPI anyway we aren't doing anything special.

Allergy: Blood tests were normal so far but we are going to do skin tests and some other blood allergy tests (that will take a few weeks). In the meantime we have her on EleCare, an elemental formula. At first they were talking about taking her off all solid food because we don't have a reliable way to figure out what she's allergic too (since she doesn't show rashes or blood in the stool). I literally almost had a breakdown (which would have been my only one) after the GI resident told me this - can you imagine two kids walking around and one can't have solid food but her brother can? But since she eats very few items anyway we can wait for the skin tests before making changes (but keep her off milk/soy). The new formula seems to be improving her constipation so we took her off lactulose for now. Our GI doctor thinks we may end up doing a 6 week steroid treatment followed by another endoscopy to confirm whether she has allergies. The steroids would suppress the allergies and if she still has an inflamed esophagus that means it is only acid reflux. This might be useful in coming up with a long term plan but I'm in no rush to have a repeat of our experiences.

Immunology: They doubt she has any underlying immune system issues since she does not seem to catch many infections.

Feeding Team (only Husband met with them so this is second hand): They are concerned about how limited a number of finger foods/baby food she's willing to eat. We may bring on board a more specialized feeding occupational therapist - not clear if that is someone coming to the house or someone we bring Penny too (I'd much prefer the former). To increase calories we are doing a 30 calorie formula mix and they want her eating about 24 ounces in her bottles per day. We are up to 19 already so I'm hopeful we can avoid a feeding tube but that is obviously not completely off the table if she doesn't gain weight. We will keep seeing the nutritionist in our GI's office.

Genetics: We are doing some "zebra" tests - including an outpatient cystic fibrosis "sweat test" but no one thinks any of those things are likely. I call them zebra because doctors are told that if it sounds like horses not to check for zebras. But here they are looking for very rare zebras.

Neurology: she was seen by a resident, a fellow and a few other neurology types. It was a "look and see" evaluation - no scans or blood work. They were totally charmed when she waived good-bye. Apparently all is good on the neurology front. Phew.

Pulmonology: Her last lung X-Ray (don't get me started on how much I hate the number of X-Rays she's had) showed the fluid is working its way out fine and she has good "breath sounds". They think her breathing issues are now in the upper respiratory (ENT zone). We did a pneumogram one night and it was supposed to confirm whether there was any blockage (ie, adenoids) that resulted in the low oxygen but the study came back negative. They are somewhat puzzled by that result.

ENT: Her wonderful ENT was one of the people who pushed (along with her primary GI) to get Penny released. He doesn't intend to see her again until the "acute event" (ie, aspiration event) is cleared out completely - about three weeks. Then we'll have her evaluated and may go back in for a sleep study. Eventually her adenoids will probably come out but it won't be a quick rush in and do it process - this make time some time/evaluation (I'm guessing by the end of August).

We have 6 follow up appointments already scheduled. The home oxygen is tough - her face is getting raw from the tape (we use tagederms) and it disrupts our nap and bedtime routine but we are trying to work on a smoother integration.

I think the synopsis is that our visit found another problem (low O2) which may have some effect on her failure to thrive but doesn't address the underlying "not eating enough" problem. She does have reflux and maybe allergies. I guess it was useful but extremely exhausting. I suspect (as I've mentioned before) that in a year she'll have outgrown all of these problems and we'll never really know what's "wrong". We are just thankful that her "chronic" conditions are hopefully not life-long ones.

Thursday, July 2, 2009

Home Again, Home Again; Mommy, Esq is Too Tired to do a Jiggity Jig

We got home last night before bedtime. Penny's on oxygen for sleeping and let's just say the set up and monitor aren't as nice as at the hospital. I got about 3 hrs of sleep and that was with Husband being on call to put her nasal cannula back in. More details to follow including a lengthy discussion of "Do the Esq's have any answers?" tomorrow. Just wanted to let you all know we are back and to thank you for your good thoughts and offers of help.