Tuesday, April 29, 2008

A long awaited play date

We finally had a play date with Christian and his folks. They were up for their 3 month check up and were able to squeeze us in before heading back home.
Christian looks great and it took a while but both kids were finally ready to play with each other just about the time they had to go home. That also could be because it had been a over a year since they had seen each other.
Check out Christian the flirt

It was especially nice to have some time to pick Colleen and Bill's brains on their feeding secrets. Christian weaned off of the pump onto primarily solid foods, very impressive. With Ellie's age, this might be something we are looking at.
It was fun and hopefully we will get to see them when they come up again later this summer.
Thanks Bill for the great pictures!

Friday, April 25, 2008

A long overdue Update

Not a whole lot of news to report over the last week or so, which is just great by me.

No rubber thing yet. We keep looking and hoping but it hasn't emerged. On the upside, we haven't really seen any ill effects of it either. This has led us to doubt if she actually ate it or not, but her pantomime of the swallowing was so convincing that we think it certainly may have happened.

We will likely know for sure on May 26 when the endoscope goes through her and has a look around. Up from the bottom, down from the top and in from the ostomy, they are going to have a look and try to figure out why things keep going out her ostomy even after the revision in January. They are also going to do a colon test over 24 hours to see how well her bowel contracts. This won't be much fun since Ellie will need to be in her crib for 24 hours but with Barney, Kipper, and Maisy we think that Ellie would sit still for ever if we just hit repeat on the magic DVD machine.

Ooooh moving colors....

We are working to get Ellie's feeds increased and are up to about 800 ml of Elecare each day along with three good meals. By our math, this puts her well past the halfway point of food to TPN.

She is growing well and that is a great sign.

Spring is here and I will try to get more pictures of our little girl out and about with her flowers.

As always, no news is good news.

Tuesday, April 15, 2008

Um, where did the rubber thing go?

One of Ellie's favorite games for the last month or so has been to help Abby and I with her central line flushes by taking the empty saline syringe and playing with it while we finish hooking her up. She has gotten very good at taking the plunger out, popping off the rubber end in her mouth and spitting it out before she puts the tip-less plunger back in the syringe. Without fail she does her trick and is very happy to play with it while we needed her to be still. Since Ellie doesn't swallow all that much we knew that she would keep spitting out the rubber piece.....

You can probably guess where I am going with this.

We were hooking Ellie up just like we do every night. Flush into the central line, give the flush to Ellie to play with, wipe cap with alcohol, hook up the TPN. Except when it was all done, the rubber piece off of the empty flush was nowhere to be found.

We asked Ellie where the rubber piece was and clear as could be, Ellie pointed to her mouth.

We sat her up and asked again where the rubber piece was. Ellie the pantomimed swallowing and showed us her empty mouth, proud as could be.

It was bound to happen sooner or later. We have been letting Ellie play with the saline flushes after hearing that another family did it. But, for some reason Ellie chose tonight to swallow the piece.

Let's hear it for having a surgeon who is accessible and happy to talk. At 8:45 I called Dr. Jennings at home and told him what had happened. Yes, home with kids running wild in the background and everything he stopped and answered my questions.

Instead of rushing into Children's for 26 tests and an endoscope, which I am sure the on-call resident would have us do, Dr. Jennings asked a couple of questions and told us not to worry.

'It will pass, one way or another. Those things are soft and not very big. Just watch her and watch for the piece. All those tests won't help and might make things worse, anyway.'

Needless to say we will be taking off the rubber piece from now on before giving Ellie the syringe.

Let the ostomy/poop watching begin.

Hopefully we will see a well-traveled rubber disc sometime soon-either out the ostomy or down below.

Monday, April 14, 2008

Buh, Buh?

Ellie has been spectacular this weekend while Abby has been away. Always smiling, never grumpy and sleeping 11 or 12 hours each night. Maybe the biggest miracle of all is that she never got sad that her Mom wasn't here. This makes me a little bit sad but also glad that Abby and I work from home and see Ellie all day, every day. When one of us is gone it isn't such a big deal, she just gets more time with the other one.

This morning she woke up giggling in her crib and whn en I went to ask her if she wanted to get up she told me:

"Up, up. Buh, Buh?," and started giggling in her crib again. She wanted to get up and play with Beth.

This made me realize that maybe it was Ellie just being great this weekend because she was excited and exhausted from playing with her aunt.

Either way she was a rock star.

Abby changed her flight and should be home after lunchtime. Karlene is back today as well after three weeks of rehabilitation after spinal surgery.

Not a minute too soon on either front. Ellie has some serious playing to do and I'm not sure that I can keep up with her.

Saturday, April 12, 2008

Dance Party

My sister keeps telling me that she never sees the fun stuff so here is a video of our after dinner dance party.

Just another fun night:

Friday, April 11, 2008

Flying (almost) solo

Abby recovered nicely since her purge on Tuesday night. Apparently it was something that she ate and it went by in 24 hours. Phew. Gastroenteritis isn't something we want going around here.

This was good for Abby since she was scheduled to fly to Colorado today to surprise her mother on her mom's 70th birthday. Both American airlines and her stomach tried to screw it up but in the end Abby left before dawn this morning and is the furthest that she has ever been from Ellie, 7 1/2 hours if the flights cooperate.

This is good thing for both of us, I guess. Abby gets to stretch her legs and be away for a little while and I get to fly solo for more than an overnight for the very first time. Okay in all honesty solo is a relative term since my sister came down from Maine today to help, but as far as the serious stuff I am on my own.

Nerve wracking and the string of what ifs going through my head is endless, but I know my stuff and know Ellie so we should be just fine.

Knowing that Children's is 17 miles east makes me feel much better.

Ellie woke up to her aunt Beth this afternoon and was burning with a white hot flame right up to the point that she passed out on my shoulder after I hooked her up to her TPN tonight. In the time between 3:30 and 8:15 I don't think that she stopped moving or giggling except to drink her Elecare and have an ostomy bag changed.
She simply adores Beth and Beth has the energy to keep up with Ellie which is great.

Part of me wanted to fly truly solo on this to prove I could but why do it if help is ready and willing to come and play?

The weather is supposed to be lousy tomorrow, unlike yesterday when Abby and Ellie planted sweet peas along our fence,
We may have to get creative to keep Ellie entertained but I'm sure Beth will think of something for the two of them. She is just fantastic with Ellie.

And she doesn't flinch at the sight of an ostomy which makes her a double rock star.

In the meantime I will try to sleep lightly to hear the pumps if they beep in the middle of the night. Abby is so good with the mom reflexes that I hardly ever wake up when they go off. this is good for me when we are together but scary when I am alone.

I usually wake up wondering why a truck is backing up in my dream instead of jumping up to answer the alarm.

Beep. Beep. Beep.......

Wednesday, April 09, 2008

I'm 2

Today is Ellie's second birthday!

I'm 2!

Considering the statistics that we were given when Ellie was born, there should be a parade or fireworks today. Two years on TPN, bright smiling, and in the 70th percentile for weight and 95th percentile for height. Amazing. Cue the band.

We (and our supply omegaven) are a long way from the dreary outlook that we had back in 2006 (link to scary numbers), but we still have a long way to go.

Ellie birthday was dampened by her mothers stomach flu but we still had a good day with her. In fact, we had a better day with a stomach flu than without since I would have traveled to Maryland early this morning if Abby hadn't barfed at 3 AM. It was fairly important trip for me but weighed against possible gastroenteritis, a stay at Children's and a possible line infection, it took about 30 seconds to cancel my plans at 3:05 this morning.

My email to my boss this morning went something like this: 'Abby is sick. If she passes it on to Ellie, Ellie will end up in the hospital. Can you find someone else to pinch hit for me?'

There really isn't an answer to that and the boss was very cool about it. Nothing like a good boss.

Instead of flying to Annapolis I was on Ellie duty keeping her away from her mom as much as I could to keep her from getting whatever bug Abby might have had. Fortunately by dinnertime Abby was eating but still feels lousy which makes us think that it might have been something she ate.

So I spent the day taking Ellie for walks in the sun, playing at the playground and trying to get some work done. A tough triple but I think that I pulled it off. Ellie didn't complain.

Her birthday was low-key again this year and for the second year in a row she had no interest in cake except smearing some frosting on her face. We didn't expect it but gave it a whirl, narrowly avoiding Ellie putting her fingers in the candle flame....

She got a kitchen from her grandparents and we managed to get Ellie a Madeline doll which was better than we had expected.

Abby even got off the couch for presents but quickly returned. She feels better but still rotten.

Her Madeline doll is just great.
A big rag doll with a trademark scar on her belly. Ellie knew exactly what it was and started pointing to her belly as soon as she saw Madeline. With the train tracks that run across her belly, having a doll that is like her but famous might make it a little bit better.

All in all an amazing feat to get here in such good shape. Somehow it hasn't seemed like we were doing anything special.

With a girl like this it all seems pretty easy.
The hard part is going back and reading the posts from back then. It has to be a really good day and usually we end up with Ellie in our lap which reminds us of how good things are.

Thursday, April 03, 2008

Frickin' China

Product recalls for things like toasters and Navin Johnson's Opti-grab are one thing. You go cross-eyed, you burn your house down, no big deal.

When the product gets injected into your daughter's heart once a day, and is recalled for things like 'anaphylactic-like reactions such as low blood pressure, shortness of breath, nausea, vomiting, diarrhea and abdominal pain' it takes on an entirely different meaning.

Today we learned that the Covidien/Kendall heparin flushes: that we use to keep Ellie's central line from clotting when it is unhooked from the IV pump may be contaminated with a particularly nasty chemical compliments of a Chinese factory that cut corners in the already unsavory business of making heparing from animal byproducts.

Frickin' China.

This is the third round of recalls that have gone around this year related to the same company,SPL that supplies the heparin to the pharmaceutical companies.

So instead of an average Thursday night, I spent mine sorting through the dozens of flushes that we have on hand to weed out the bad flushes from the good.

All told we had less than ten good ones to get us through until the FedEx arrives tomorrow.

The bad ones, too numerous to count:
Now we wait, cross our fingers, and hope that the recall doesn't expand to include more lot numbers. The earlier recalls have expanded and one company recalled all of their flushes.

It is tough enough to push a flush into Ellie's CVL without thinking that it might be contaminated.

Frickin' China.

For those of you who have a central line and use flushes the recall announcement is online: http://investor.covidien.com/preview/phoenix.zhtml?c=207592&p=irol-newsArticle&id=1123186

Update: This morning a fresh shipment arrived via NextDayAir from NutriThrive. We have a dozen fresh flushes from BD. When I spoke to BD this morning they assured me that they manufacture their own heparin in the US and will not be affected by the problems in China. For now we will take them at their word and spread the news around. Now that we are feeling better read the article in the NY times from this week for an scary look at how the 'dirty' heparin is made:

Link to NYTimes Article

Wednesday, April 02, 2008

Foods, poop and Easter

We had two clinic appointments in the past two weeks. Ellie is gaining weight and has grown another inch. Everyone is still very happy with her progress and told us to keep doing what we are doing.

Ellie's milk pump is still only at 26cc an hour for about 20 hours a day. But she has really started eating more solid food. She eats 3 meals with many snacks in between. She also is drinking sippy cups of Elecare as fast as we can fill them. We still have to watch her intake and make sure she doesn't over do it, that means only an ounce or two of Elecare at a time. And we have to make sure that the foods she is eating are always short bowel friendly. We tried macaroni and cheese a week ago, and we just recovered from it a few days ago. Lactose is not Ellie's friend.
We have found that as long as she poops at least once a day she is pretty good at hydrating her self and we can give her a lot more freedom with what she eats. This means that we do have to use a suppository every once and a while to make sure things keep moving. It works really well for her, but Gib and I hate doing it.

Ellie is also now in a play group here in town and also goes to EI (Early Intervention) with me on Thursday mornings, I have a mom's group that I go to and Ellie hangs out in the other room with all the other kids. She loves going to both and never wants to leave. I know cold and flu season are not over, but we are close enough that we decided to give it another try. (please knock on wood)

The past week has been interesting, Karlene our one and only nurse has been out for spinal surgery. It wasn't a big surgery but it does require a 3 week recovery time that does not include chasing or wrestling with a toddler. We have missed her terribly, but we are managing to scrape by. Ellie asks about her daily and when some one pulls into the drive way Ellie yells, "Ka!" and runs to the window.

Ellie is also starting to talk and sign like a mad woman. When we were visiting some friends last summer their little girl Mia showed us the sign for zebra and caterpillar. Those are now Ellie's favorite words (she says zebra while signing it and signs for caterpillar) and she just started putting two words together, this morning she said, "bye mom"as she got out of bed with her dad to get unhooked from her pump. Altogether we guess that she has about between 25 and 50 signs, some American Sign, and some Ellie sign that only we and she would recognize. We should really write them down sometime.

I'm going to finish off with some late pictures of Ellie's Easter day, we spent it at my sister's house. Dying Eggs
Running to get the most eggs
"Look! a little chick!"
"Let's see if it can swim"
Showing Alex and Claire where to go next

"Hey! there's stuff in these eggs"
And Yes, Ellie collected both baskets worth of eggs.