Monday, June 29, 2009

A Coil & Other Updates

The good news is that it has only been one week since I posted last. I thought surely it had been longer. The bad news is that when you go a whole week without posting and you used to post daily, you end up with lots to say. So get ready for information overload.

The first fun fact is that on Friday Elise was up to 9 pounds, 2 ounces! She's ginormous, I tell you. She has, however, been struggling with constipation so her weight was a little higher due to some excess baggage she was having trouble letting go of. The good news with that is that the problem seems to be clearing with a pause on her vitamins (since they have iron) and a bit of prune juice each day, and she treated grandma with a nice large present yesterday afternoon while I was out.

Speaking of grandma, things have been a bit rough around here. I didn't mention it last week, but Elise has been throwing up whole feedings 1-3 times per day most days for the past couple (maybe three) weeks. We think it's her reflux, but the doctor said on Friday that she wanted to wait until Elise's constipation has cleared and she's pooping 1-2 times per day to make sure she's not just spitting up because she's constipated. If she keeps spitting up excessively like this, we'll put her on a stronger reflux medication. I've been feeding her more smaller meals when she's not so hungry that she needs a bigger meal. I'm also stopping her many times during her feedings to burp her to ensure she doesn't spit up because of extra air.

That said, it's very difficult to watch your baby loose so much of her food each day when she only eats 5-6 times per day in the first place. And we're not talking a little spit up and needing to maybe change her clothes, we're talking 90-120 cc (3-4 ounces) of milk (and sometimes medicine and/or prune juice depending on the meal) coming in full force projectile mode. This results in needing to change her clothes, needing to change all of my clothes (because it quickly seeps through the layers of my clothing) and needing to clean the chair, the floor and anywhere else it gets. I've started feeding her with a thick towel on my lap, and she's hasn't spit up in my lap since. Last night she had a large spit up in her bouncy seat though, which also went all over the floor and my slippers that were next to her seat.

All that to say, I haven't been doing well between exhaustion, trying to breastfeed (which is going wonderfully!!), bottle feeding, pumping, keeping up with some housework, etc. I called my mom crying a couple of days in a row, but she was planning on coming Tuesday so I was trying to hold out until then. Saturday morning I knew I just couldn't do it without her. So I called her around 10:15am, and she packed her bags and was here by about 6:30pm. I'm so thankful to have her here and only wish I had asked her to come sooner!

And speaking of being out yesterday, I was able to get together with fellow blogger, Amanda, and to briefly meet her adorable daughter (who was born at 26 weeks in August of 2007 and weighed a mere 1 pound, 11 ounces - 1 whole pound less that Elise) and three of Amanda's sisters. Amanda and I had a wonderful three-hour coffee chat at Starbucks - the longest I've been away from Elise since we brought her home. I find it so refreshing to know others who have been in a similar situation to ours, and Amanda has been a huge support to me via email over these past four months. Her daughter has severe reflux issues so it also helps to have someone who understands on such a deep level how hard it has been to watch Elise lose so much of her food each day and not knowing exactly how to help her.

This morning we had an appointment with the cardiologist at 9:15am. Getting a baby to the doctor that early in the morning proved to be a bit of a challenge, and I'm headed to take a nap (thanks to my mom!!) once I finish blogging. I hadn't expected much at this appointment and thought we'd here the typical, "she still has the PDA, and is asymptomatic so we'll see her in a few weeks and hope it closes." Unfortunately, after answering various questions from the cardiologist and having an echocardiogram done, he said that because she's taking so long to heat (30-45 minutes), often having to catch her breath and is sweaty feedings and at other times and because the echocardiogram showed that her left ventrical is enlarged from pumping the extra blood, they are going to have to place a coil in the ductus to close it.

So on July 13th we'll be going to get that placed at the hospital. My mom went with me and Elise to the appointment today; Kit didn't go since we thought we were just going to get the usual spiel so now I get to show him the picture the doctor drew on and explain it to him in laymen's terms until we meet the doctor who will place the coil who can explain it better. The cardiologist showed us an ultrasound picture of what the coil will look like in the ductus as well as a little sample coil taped to a piece of paper. It's tiny and thin, maybe like a two or three pieces of normal thread wound together in thickness. And it's made of platinum and has some "fuzz" (that's what the cardiologist called it) that helps it to stay in place and keep the PDA closed. Here's a sample ultrasound picture pre and post coil placement to show kind of what it will look like. In the first picture, you can see that the blood is flowing through so it's darker on the left side. In the second picture, you can see the coil and then that the blood is no longer flowing through.

The procedure is fairly simple. The put a very small catheter (I believe) in the artery in one of her legs that they then feed up into the heart to insert the coil. She should only need to be in the hospital for a day. There is a small chance she'll need to stay overnight, but it's most likely that she'll come home the same day.

The good news in all this is that she doesn't need to have surgery! The cardiologist explained what surgery would entail since, although he recommended the coil, he said we could choose to have her have the surgery. Not sure why anyone would choose to have their child undergo a surgery that would require a fairly large incision in her back near her ribs, the deflating of her left lung, the removal of the PDA and then the putting of everything back together is beyond me. We're going with the coil. There is a small chance she might need to have another one put in six or so months from now if for some reason this doesn't keep it closed, but he said the doctor (can't remember exact specialty - maybe cardiac surgeon??) who will put in the coil is very good and does these in babies who weigh 500 grams (barely over 1 pound) so the likelihood of it not working is very slim.

My mom thought to ask about whether this will mean she has to carry something saying she has metal in her body for things like the airport and whether she could have MRIs, etc. The coil is so small that there's nothing to worry about there. He said it's made of inert matter so it doesn't hurt the body in any way to leave it in for the rest of her life.

For now, she's on another diuretic to help pump fluid from her body, which should help with her heart function until she can have the coil placed.

Well, that's way too much information and it's now actually Tuesday (though I'll leave the post date as Monday) so I'm going to go ahead and post this. More to come later.


Mandy Gramkow said...

Hang in there Emily! You're doing great! Our Ellie had some severe reflux problems too. She wouldn't necessarily vomit though, she just refused to eat. Would arch her back so bad, purse her lips, bat at the bottle. She knew it hurt. It was horrible to go through. Thankfully she grew out of that phase! You'll get there too. Hope the docs get it figured out!

steph said...

You have a lot of love and an incredible Mom there for you. Your Mom is the best. Miss Em, you hang in there. You are a wonderful Mom too. Wish I lived closer so I could help. Little Miss El's package is on the way shortly, thank you for your address.

Amanda said...

Emily meeting you at Starbucks was indeed one of the highlights of my trip! I had no idea we were there so long, I was enjoying your company so much. :) I used to bring this big thick white hospital blanket I "borrowed" with me everywhere I fed Cadence to try and minimize the mess and it was easy to toss in the washing machine. Even now 2 months from her 2nd (actual) birthday, she eats in her papasan chair with a big blanket covering it just in case. It IS frustrating to have an underweight baby throw up an entire meal. Eating (and keeping food down) just seems so basic and fundamental that it's all that much harder when you can't seem to make it all work. I drive myself crazy (and poor hubby too) trying to figure out why she puked in an effort to try and avoid it again.

I'm glad your mom is there to help out and was able to be there at the Cardiologist's appt as well. It's always good to have a second set of ears to catch everything and help ask questions, especially with big news like that. I guess it's good that she won't have surgery and that they can do the procedure with hopefully a quick hospital day stay. We'll be praying.

Way to go on the sleep! And glad to hear the breastfeeding is going so well!

Melissa Nickerson said...

Thanks for the update Em, praying for you guys! Mel