This post comes with a warning...

Warning---this post is TOTALLY about vomit, so if you can't handle it, walk away. I mean it. I don't want to hear later how "gross" this post was!



















Ok, now that only the die-hards are still reading (although I am going to question your fascination with LA's digestive system)...


We are very excited to announce that (other than a small 2 oz vomit that we are just going to ignore since I really think it was a fluke) LA has not vomited or had her morning gag session in A WHOLE WEEK!!! Let me repeat...A WHOLE, ENTIRE, SEVEN-DAY WEEK!!!!!!!!!!!!!!!


That might not be impressive to some of you, but understand that every.single.day since mid-August, LA has woken up like clockwork around 5-5:30 am with awful gagging that eventually brings up stomach bile. (I warned you this post was about puke. It was your choice to keep reading.) Our pediatrician and GI are stumped by it and we have tried various meds and even had another brain MRI done to see if there was something causing this. Once we started tube feeding, we still struggled with the morning gags and have also struggled with keeping her feedings down. Good times I tell you.


LA's daycare teacher, Mrs. Ashley, is an absolute SAINT because it is not just for us that LA vomits. Oh no--she spreads the joy with all her caretakers (but Mrs. Ashley never complains--can you tell we love her?). Here she is with LA on Halloween.

Anyhow, as I was saying, since recovering from this latest bout of pneumonia, LA has not gagged or vomited AND she is back to full feeds at full speed! Seriously, we are beside ourselves we are so excited! I leave you with this picture of LA getting one of her breathing treatments (which she freaking LOVES--strange kid). Like I said, we are ALL happy about the turn of events!

Merry Christmas!

I don't have much time to write, but I did want to update everyone on LA. She was feeling MUCH better by Christmas (other than the 4 day sleep boycott she went on--thank goodness that seems to be over for the most part). Luckily, we were able to avoid going to the doctor or the hospital once she started the antibiotics. She was absolutely SPOILED by Santa, her grandparents and her aunt/uncle/cousin for Christmas. We could barely fit it all in the car to go home (and we have an SUV!!). I'll try to post more pictures later!

Update

If you haven't already heard, poor LA has pneumonia again. This week is just not our week. This is the exact time last year she was hospitalized with pneumonia. So far, we are able to treat it at home with breathing treatments, antibiotics, and lots of fluids. She is having a hard time keeping her formula down, but is doing ok with Pedialyte. Poor little thing was skinny enough so this is not helping at all.

Send good thoughts her way please!

Santa's Video Message to Lily Anne

Wow! Santa sent Lily Anne a very special video message today! He seems to know everything about her :)

You can see what he had to say for yourself!

Merry Christmas!

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Thanksgiving

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I know, I know!

Yes, I KNOW I haven't posted in a while (and don't think that many of you are letting me forget that)! We have been super busy and, quite honestly, TIRED! We are all getting used to LA's new way of eating and we are still working out some issues, but she seems to be adapting pretty well. I must say, this is NOT, by any stretch of the imagination, the way we want LA to eat, but...to make lemonade out of lemons, there ARE some advantages to tube feeding :)

1. When your child falls asleep in the middle of eating, she doesn't do a face plant in the food!
   
2. No more wasting time prepping food--just pop the top, pour and eat!
3. Food is delivered to the door.
   
4. Food is paid for by insurance (at least they are useful for something!)
5. She can literally eat anywhere! We love to multitask by shopping and eating at the same time.
6. No more "mystery" food stains in clothing.
7. Less dishes.
8. New crafts to make (I'll explain that one soon).
9. Hands free feeding for the parents--let the machine do it for you.
10. Dog still cleans up when "food" falls down.

To explain the last picture. I didn't have the extension tube connected tightly enough to the feeding bag and it was leaking just a tiny bit. Leave it to Baxter to find the food "falling from the sky." Certain Pieczko/Bannister family members will remember a similar incident involving Baxter and some turkey drippings :)

Oh, LA got her first hair cut this week. I'll have to get some pictures of that to post soon as well!

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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Bedtime :)

September Sewing

Did you know that September is National Sewing Month? Well...it is :) I have really enjoyed working on some fall outfits for Lily Anne this month--and espcially during this fall break! It is all done during nap time and after she goes to bed because sewing and toddlers do not mix!

I also made her Halloween costume...but you'll have to wait to see that one :)

Lily loves her Tigers...and True Love!

Lily Anne was decked out on Thursday to show her Auburn Pride! I do think that orange and blue suit her very well! Now we just need some day games so LA can actually root her Tigers on! It has been very hard to properly "encourage" my team on with a sleeping toddler upstairs!





Bulldogs and Tigers are nothing though in comparison to LA's true love. Yep, her heart has been stolen and she is smitten! At the mere sound of his voice, she drops anything she was doing.

Yep, that would be Elmo!
Apparently she is into red heads.

GAME DAY!

Justin's favorite season of the year has arrived...College Football Season! Now, you all know that we are a "mixed marriage" otherwise known as a "house divided." That puts LA right in the middle of things. After all, she is half tiger, half dawg. So, to keep the peace, we alternate her game day clothes each weekend. UGA got opening day this year, so LA was decked out to help her daddy root on the Dawgs.

Chillin with Daddy over at the Hatton's house!

Who needs a barcalounger when you have the daddy recliner?

This is getting boring, maybe I'll just read my book!

Sweet Casey (Baxter's girlfriend)

Wow! Jethro is getting big!

LA made it through the end of the game and then crashed in the car on the way home with Mom. She had a really bad virus/sinus infection since last Thursday and, while she was as happy as ever, the spunk was subdued. Luckily, she appears to have made the turn towards feeling better and she was all over the place today! In fact, she even helped Daddy grill the chicken for dinner!


Ummm...Daddy, are the flames supposed to be that big?

Grandparents!!

Last weekend, LA was completely spoiled by having both her grandmas, all three of her grandpas and even one of her great-grandmas dote all over her! She absolutely hated all the attention...can't you tell (the only ones she doesn't have a big smile for are mom and dad---nice eh?)

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