A few highlights from the week

Things were not doom and gloom at the hospital. No, we did not want to be there, but until the day of surgery and part of the following day, LA was full of 20 month old energy and wanted to be on the move. In fact, it was more challenging keeping her entertained since she was not sick in the traditional sense. So, some of the ways we kept her busy:

Watching the Auburn/LSU game! WAR EAGLE!


Playing with the stuffed animals and toys sweet people brought (we came with one stuffed toy and left with 7)

Pausing for just a moment to watch the game to find out why mommy is jumping up and down.

Splashing in the fountains (probably against hospital policy)


Wanting to do it again, and again, and again...

Pulling the wagons

Pushing the wagons

Riding in the wagons



The NG tube you see was temporary until they placed the Mic-Key Gtube in her stomach. Here is one of her first feedings using her Mic-Key. As you can tell, a full belly makes for a sleepy toddler.

We are home!

Hooray!

One Day Post-Op

Today went really well, especially considering all that Lily Anne went through yesterday! She was not her usual peppy self, but did want to get up and play in her crib several times throughout the day. She was very quiet, but that was to be expected. Poor little thing had the droopy, drunk-looking eyelids today from the meds and fatigue. She took two naps (one on mommy and one on daddy)--she just didn't want to be in the crib--and that was ok by us!

This afternoon, she began using the feeding tube slowly. The first feeding consisted of a "half dose" of Pedialyte. She did great, so her next feeding was a full dose. That also went well. So...in about an hour, they are going to try real "food." Hopefully she will handle that well and we can begin to make our way towards discharge! I am hopeful that tonight's and tomorrow's feedings go well and that Justin and I can begin to learn how to use and maintain LA's new accessory. I want lots of practice before we leave our nurse safety net!

We don't know exactly when she will be discharged (probably not until the end of the week at the earliest). She has at least one major "milestone" she has to do first and, well, it is not the most lady-like of things to discuss. Let's just say, she needs certain things to move. So, if you are so inclined, you can send us those positive vibes! One day she will hate me for writing that!

Thanks for all the well wishes! We are doing ok, trying to get rest, and just waiting out the recovery. Justin and I take turns staying at the hospital at night so that one of us can get a good night's sleep. The pull out couch here in the room is sleepable..just not that cozy and certainly not built for two! We are all ready to go home.

Surgery Update

LA is in recovery right now from surgery...waiting for her to come back to the room is hard! She ended up having a lot more done than we expected because they discovered from the upper GI that she had an intestinal malrotation. Luckily, we discovered this without it having caused serious issues. So...she had a Ladd procedure done, a Mic-Key button put in, her appendix removed (standard practice with the Ladd), and her gallbladder removed. Her gallbladder was so fragile that it tore during the process so they had to remove it. The ENT checked out her larynx and it is not cleft so her swallowing issue is probably caused by her ACC. While the ENT was in there, he clipped her upper frenulum since that was on the "if she is ever sedated, let's do this" list.

Anyhow, the surgeon is very optimistic about her recovery, etc. Now, they just need to bring my baby back to me!!!

And we thought this was going to be easy...

Well, this morning got a bit crappier.

When they did the upper GI and small bowel tracking, they discovered that some of LA's intestines are slightly malrotated. The problem with this is that it could completely rotate and cause serious problems. Because they found this electively, she is not in any immediate danger, but this is an issue that needs to be dealt with. The good news is that the surgery she is going to have is laparoscopic and should be a "forever" fix to the intestine issue. It is called a Ladd's procedure if you are familiar at all. We don't know what time the surgery will be now that it has changed, but it will now last 2-3 hours and she will have a longer recovery time (since she will have to have a bowel movement before she can eat to make sure the bowels are working properly).

Our doctor promised us that they would stop doing tests now.

And we are back :(

We started this blog shortly before LA was born to share with our family and friends what was going on with LA when we discovered that things were not as they should be. As I shared with you back then, it is easier at times to write about what is going on than to talk about it. Now, that still holds true, but apparently LA's fan club has MANY members, so it is also a quick way to tell everyone what is going on.

We are back in the hospital with LA. But for a reason NONE of us expected.

Let me back up a little. Since mid August, LA has been struggling in the mornings. Like clockwork, she will heave, gag, and ultimately vomit at 5-5:15 every morning. It is a mix of bile and mucous. We have discussed this with our GI and our pediatrician and have been trying several medications to help. She even had an MRI done at the beginning of the month to see if there was pressure building in her brain causing the vomiting.

The other part of the situation is that LA has always had trouble eating. She does not laterally move her tongue with food, but just lets it slide to the back of her tongue and swallow. Because of that, we have been working with an OT and, more recently, a Speech/Language Therapist (specializing in feeding therapy). We were making progress. LA could drink from an open cup and was actually showing an increase in the amount of food she could consume. Knowing about our vomit issue and that LA has been congested a lot lately, our SLP suggested getting a swallow study done to see if any of the liquid was going up into her nose instead of just down her throat.

On Thursday, we went to get the swallow study done. They put LA in a chair similar to a car seat next to an x-ray machine with a video monitor attached. The process involved me feeding small amounts of barium laced liquids (of different thicknesses) and purees to LA. She failed. And by failed, I mean, she FAILED MISERABLY. Basically, she is aspirating some of anything that goes into her mouth. That means that a small amount of liquid/food is going into her airway every time she swallows. This should not happen. Not even a little bit.

It has been determined that it is very unsafe for LA to consume anything by mouth. Because of this, she was immediately admitted into the hospital and had an NG tube put in. Yep, remember that awful nose tube she had when she was born? It's back. Temporarily.

With the team of doctors that we are working with, we have decided to move ahead and have a more "permanent" feeding tube put in to her stomach. I say "permanent" because, if one day she is able to eat by mouth again, the tube can be removed. The crappy news is that this is not a problem that doctors can fix. Instead, this swallowing issue is only something that can be bypassed. She might outgrow it, but chances are this is neurological and one of the "lovely" complications of her ACC.

Anyhow, the news hit us pretty hard yesterday and today we are slowly coming to terms with what needs to be done. It is not anything that I would ever want for my child, but there are worse things. The helipad for the hospital is right outside our window and I have already heard it land twice this evening. I have to keep that in mind. When you are in a hospital and hear "Code Blues" and know that some kids won't leave, at least mine will.

The surgery is scheduled for Monday as long as everything goes as it should this weekend. She has to have enough bowel movements to move the contrast out of her system for an upper GI to be done. To have an upper GI, she cannot eat for some time before it. No food means no poo. Fun times...

Of course, the BIGGEST issue right now is how to keep a 20 month old who feels GREAT entertained in a hospital. We have met every single nurse on the floor and most of the other parents...yes, we have taken that many laps around our floor. LA loves to walk and just keeps on going! We are all tired---except LA!

So that is what is going on...

First Football Game!

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Fun at the Pumpkin Patch!

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Bouncy Bouncy Baby!

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