Tuesday, March 25, 2008

Happy Easter!

Thanks to grandpop for getting these family pics!!!

Another great group shot - minus one wandering 4 year old!!

Emily's pretty eyes are open!!! Uncle Evan had the magic touch. ;)

Brenna's Easter dress and bonnet

Carter's Easter gear (or is he a newsie??) I just couldn't resist that hat!!!!!!

Brenna really got into her basket!

Carter's checking out his rattle from the Easter Bunny.
Emily is showcasing her basket. And yes, we do take her out of the swing sometimes!!!

We had a nice Easter lunch and time spent with the Gollihur side of the family.

Thanks KIM!!! I almost figured it out!!

The "Nap"eroo!

Carter is all bounced out.
Brenna fell asleep while bouncing and sucking on the seat. She multi-tasks!!
She is out!

Carter and Brenna have really been enjoying the jumperoo. We now call it the "Nap"eroo because almost everytime they play in it, they fall asleep! The funniest part is that they fall asleep, but love to bounce so much that they'll start jumping again in their sleep!

Check out the videos! The top video is of Carter, it's a little dark. The one below is of Brenna.

Happy St. Patrick's Day!!!

Grandmom (Joanne) got the babies these cutie bibs. We missed you while you were gone!
Meme and Pepe were here for another visit. Thank you for all of your help!

We didn't do much else to celebrate the occasion, but we did get the bibs on and I put them in their peapod shoes from my friend Kim! Drew wore my shamrock necklace too.

Emily's progress

I see a little smile!!
We keep the footie hospital sock on her hand to keep her from getting her finger up under the tube and pulling it out.

Now that Emily is home, we have been having ups and downs with the feeding tube. She had been throwing up after many of her feeds, so we tried doing a continuous feed during the day (We already do a continiuous feed at night). That didn't seem to help, so we switched back to feeds every 3 hours so she could have a break in the middle and she was still having trouble. After changing her tube, she seemed to do much better.

She was also having a slight fever and a cough at the same time. The cough was not helping to keep the food down, of course. Her fever is gone, but the cough is still lingering.

We may need to keep adjusting the amount of formula/water she gets for each feed until she can keep every feeding down.

She has been trying each day to drink from her bottle and most days drinks about 1/2 an ounce (the whole day). There have been two days that she drank 2 ounces by mouth, so we're hoping for more days like that!

Tuesday, March 18, 2008

Pimp my Stroller!

A standard Runabout stroller
Our customized Runabout stroller!

A guest column: (by Gee-off)

The story behind the stroller...

As the parents of triplets, the “gear” required is very different from what you'd need for just one baby. One major aspect is traveling. Strollers made for triplets vary in style and durability, but most have major problems with steering or fitting through doorways.

Berg has been making the Runabout stroller since 1988, but the price tag of over $800 scared us away. The reviews from other triplet parents made it clear this was the ultimate stroller, but we couldn't qualify that expense. Luckily, a generous mother of triplets in Maryland offered us a used Runabout for free if we could pick it up. My brother, Mark, and I made the 7 hour (round trip) drive last spring and brought back our prize. I'd love to tell you that it was immaculate and in new condition, but it was clearly an older(I figure at least 8 years old) model and had seen better days. The purple seat covers were ridiculous and one of the seatbelts was torn and missing two buckles. Still, a fantastic stroller that just needed some TLC.

Since we knew the babies wouldn't use this stroller until they were bigger, it wasn't until February that I started to clean and restore the stroller. I prefer the term, customize, because even in perfect condition, the Runabout looks more like something from another planet. I washed down the frame and reversed the handle for ease in steering. The tires, tubes, and fender all needed to be replaced. I also was able to strip the covers, canopies, and 5-point harnesses from older car seats and fastened them using a Dremel tool to widen holes, some replacement canopy ratchets from Evenflo for the canopies, and Aimee's Crop-a-Dile eyelet setter to keep the cloth from tearing.

The pictures show our final product and a stock photo of the newest model from the Berg website. The only part that I'm unhappy with are the red handles on the bottom. We're missing one and the color really doesn't match the rest of the stroller. I've tried all the normal avenues for replacing them, but have had no luck. The problem is that the handles are 1” diameter and bike handles are typically 3/4” diameter. If anyone has suggestions- I'd love to hear them.
A review from "anonymous":
I just love what you did to this stroller! I can't believe it's the same one. Yours is so much better than the original. You must be one completely amazing, extremely creative guy.
I bet you're really hot too!! ;)

Easter Egg Hunt

We ventured out with the whole family to the park in town for the big Easter Egg Hunt. Meme and Pepe were visiting to help us, and we brought the babies out in the Runabout for the first time.

As usual, it was very crowded and the hunt lasted all of 20 seconds. Each kid was limited to 8 eggs and we accidentally picked up 9, so Drew put one back down for a little boy who didn't find any! Aww.

Drew had fun playing games and won some prizes. They had some of the same games as last year and Drew knew even before we arrived that he wanted to play "Plinko". (Mommy likes to watch The Price is Right!) It's a homemade version of the game with balls that fall down a board full of nails and he won a prize ticket for landing in the slot with the flower. Very fun!
And he got to play on the tire swing and slides before we left. Fun day!

Pediatrician Appointments . . .

. . . for Carter, Brenna, and Drew this time!!! :)

Actually, Drew's 4 year old check up was back in December, but I never put up his stats.
He weighed in (on 12/18/07) at a whopping 42" tall (93%), and a lean 36 1/4 lbs (70%). Go Drew!! This is a picture of Drew and his Great Aunt Sue on Christmas Day.

At 6 months (an actual picture from March above):

Carter weighs in at 14.2 lbs (5%) and is 25 1/2 inches tall (15%).

Brenna weighs in at 15.5 lbs (30%) and also 25 1/2 inches tall (50%).

Carter is now the peanut of the group. But "shhhh," don't tell him that!

Thursday, March 13, 2008

Emily came home today!

They got us going with our discharge bright and early this morning and we were out of there by 11 am!!

She still has her tube in and got her first feeding through the machine at home. The HomeCare nurse came by to check to make sure I was comfortable doing everything and to check her prescriptions.

Now we have about a zillion follow-up appointments to make.

But she's home and she took almost an ounce from the bottle so far today too.

I'm glad she's home and glad to be home.

And we would also like to post a big thank you to all of the people who have been so generous upon hearing of Emily's illness. We have been getting dinners provided for us, and lots of gifts to help us through this difficult time. It means so much and we are sincerely appreciative. Thank you all!!!!

Wednesday, March 12, 2008

Almost home

Emily took an ounce and a half of formula from a bottle yesterday!! Today, she was very sleepy and only took a little more more than half an ounce. But it is still progress.

They wanted to send us home today, but they need to do one more blood test at 3pm, and we need to get the supplies from the HomeCare company. They were supposed to come today, but they won't deliver the supplies unless Emily is actually home. So, it looks like we will ALMOST definitely go home tomorrow.

I was trained to place the NG tube and use the feeding machine - the machine pushes the food through the tube at a set rate for a set time. I actually placed a new tube in this morning. And they said I did a great job! But I still didn't like it.

I learned that the tube can stay in for up to 30 days before having to replace it. So as long as Emily behaves, and doesn't pull it out, I might not have to do it again. Of course, that's me being optimistic that she'll be eating well enough to come off of the tube within 30 days. But I think she can do it!!!

Monday, March 10, 2008

Teeny Weeny Baby Steps

So, Emily started to suck on my finger yesterday!! And then she went on to take about half of an ounce of water - a little bit at a time - from a bottle! We tried again today and she sucked on my finger and took some water from the bottle again. So we are headed in the right direction. Under the direction of the speech therapists at CHOP, we are using only water for now. In case she gets some in her lungs, it won't be formula.

Oh, and I've seen some smiles here and there today too. Yay! She even followed one of her toys with her eyes tonight when I came back from going home for dinner and she was awake and waiting for me.

She is still getting her formula through a feeding tube and will be going home with it. I will get trained tomorrow on how to place the tube myself. Do I get my nursing certification yet?? I'm scared to do it, but the nurse said one tube can stay in for a long time before replacing it if she doesn't pull it out. That's the good news.

The bad news - she pulled out her first tube after only one day!!!!! Sneaky girl - we now have a little hospital sock over her right hand so she can't snag the tube with her fingers. But she still tries!

Good night!

Saturday, March 8, 2008

Drew visits Emily

The "marble works" at CHOP
The black ball is flying in the air.
Check out that smile!

I brought Drew with me to the hospital on Thursday, so Gee-off would just have Carter and Brenna at home. And I thought it would be nice to have some one on one time with Drew when we weren't in the room with Emily.

CHOP is very kid and family friendly so I knew there would be plenty for Drew to see and do while we were there. The PICU has a playroom where he got to play with cars, trains, a big monster truck, instruments, a medical kit, and dinosaurs - which he took back to the room for a while too.

They have a TV in Emily's room, so he got to watch some cartoons. And they have a kitchen on the floor so we had some free juice and cookies for a snack. He also got to talk to Emily's nurse and meet her endocrine doctors and speech therapist.

For lunch, I took him down to McDonald's (yes, they have one right in the hospital!) and he got a Happy Meal with a chocolate milk shake. After all, it was a pretty special trip. Then we sat in the atrium and played with the large "marble works" exhibit. It's an about 8 feet tall enclosed structure, made of metal tracks that move extra large "marbles" all around and make music, spin through loops and bounce on platforms. Lots for a four year old to take in!! He really loved it.

When I asked him what his favorite part of the day was, he said, "drinking his milkshake in the elevator." Cute!

As we were leaving, he said good bye to Emily's nurse. And as we were walking away, he said to me, "I love that girl!"

As for Emily, her calcium has come way down. She will not get anymore calcitonin shots right now. Some of her other electrolytes have been too high or too low, so she has been getting some supplements through her ng tube. She has thrown up a few times since the tube has gone in and has not really been making any progress with her suck.

She has been stable enough to move her out of the PICU though, and she will be moving to the endocrine floor today.

Thursday, March 6, 2008

Medical Update - Thursday, March 6, 2008

The bone scan came back negative - no spots on her bones. The "thyroid-like" hormone came back low - another good sign that there is no cancer. We are still waiting for a few tests - and still have no answers to the reason for the high calcium.

She started calcitonin last night (an injection) and will continue to get it twice a day. Her calcium came down in the 12 range today. Still not quite 10.

The speech therapist came to evaluate her suck/swallow/feeding issues today and was extremely concerned. Her suck is barely there and her gag was not very sensitive at all. She recommended an NG tube - a feeding tube. She absolutely hated it and cried for two hours. She let her nurse know about it too! For a little girl who has very low tone, she can sure put up a good fight. She had to get a second nurse to hold her down!!!

Of all of the things she has had to endure - this pains me the most for her. I want her to be able to eat by mouth. She worked so hard in the NICU figuring it all out. And she has done so well with her eating for over 4 months. And then so suddenly she can't eat at all. It hurts my heart.

Obviously, it is best for her, so she does not aspirate her food into her lungs and develop pneumonia. So they had to find a formula for her that is low in calcium and she is getting a constant flow of formula through her tube - a bit more than an ounce each hour. She seems pretty contented as I write this and that makes me feel better.

The endocrine team of doctors seem to suggest that this high calcium issue may have been something she has had in the past because she has some calcium deposits on her kidneys and they don't just appear all of a sudden. So it follows then, that this may be something that will be a chronic issue for her in the future.

I think that's all for today. More tomorrow . . . . . . (including highlights of Drew's visit to the hospital yesterday - FUN!!!!)

Wednesday, March 5, 2008

At CHOP, Again!

Little Miss Emily is back at the hospital. She started eating less - alot less - and having difficulty sucking and swallowing. She was choking some on her bottles too. So when she got to only taking less than an ounce in 12 hours I called her docs and we went to the ER on Monday morning.

They took us right in and checked her out. Her neuro docs came to see her and because she was not dehydrated they were going to send us home! But, unexpectedly, her bloodwork came back with an abnormally high calcium level. And that changed everything.

She needed to be admitted to the Pediatric Intensive Care Unit. High calcium can be caused by some pretty serious issues; such as heart problems, kidney infections/failure, para thyroid problems, and malignant (cancerous) tumors. They started using Lasiks, a diuretic, and lots of fluids to get her to urinate more frequently, which would help excrete the calcium. They did an EKG, which showed normal heart rhythms. They did blood work and an ultrasound of the kidneys which showed they are working normally. And the oncologists checked her lungs and abdomen and found no masses/tumors, so they do not think she has cancer of any kind. Her thyroid levels also came back normal.

All good news. But her calcium is still elevated (lower than it was though) and they just don't know why. We are waiting for 2 blood tests which will hopefully clarify what's going on.

We will continue with the lasiks and possibly add a medicine to get the calcium back to normal. We are going to do a full body bone xray to rule out any spots on her bones. She is still not taking any food by mouth, we can only get her to take enough pedialyte to get her medicine down. The rest she gets by IV fluids. She's been sleepier than usual, and the high calcium can cause lethargy as well as muscle weakness. But she's been a trooper, as usual, and we just can't wait to figure this hurdle out and get back home again.