Home again, home again.

Right before surgery with a naso-gastric tube going down his nose into his tummy.
Right after surgery, still out from anesthesia.
Back in his hospital room.
Close up of his belly.
Oma and Opa visiting their youngest grandson
Arie came home on Saturday. He's doing MUCH better and seems very happy to be home. I think adjusting to the new feeding tube is more of an issues for mommy and daddy than for him! It's pretty time consuming, and I feel like all I ever do is feed him either by food bottles, food by mouth, or food by tube.

Pain wise he is much better. We're just giving him Tylenol, Zantac, and his antibiotic now (through the tube... a HUGE blessing for a baby who HATES meds!).
We've already given him a few feedings, but the one last night (during the night) was AWFUL. The tube became unattached over night, so he woke up SOAKED with liquid. We finally figured out what we did wrong, so hopefully that wont happen again. He gets fed via. tube after every meal, and all night long.

My biggest fear is that he will roll around all night long and either strangle himself with the tubing or yank it out. Ben's biggest fear is that our really really stupid English Bulldog "Gertie" will see it and think it's a toy. Yuck.
I'll just keep my fingers crossed about all of that.

Update... still in the hosptial.

Arie is still in the hospital... he had surgery today (this AM). Everything went well, his endoscopy was normal, and he now has a PEG feeding tube in place. He's on Morphine for pain. Hopefully he will be discharged Sat or Sunday.

We did learn, however, that they want Arie admitted to an inpatient feeding program for anywhere from a couple of weeks to a couple of months. There is a great hospital in our state with a wonderful feeding program that we (and the doctors) are looking at. Apparently the rest of us would stay at the Ronald McDonald house. There is no rush to do it, so perhaps we will do it over the summer. I just can't imagine leaving Elaine and Micah for more than a couple of days. It's been so hard being away from home these past couple of weeks (between my hospitalization and Arie's).

Please keep up the prayers that all goes well. I have LOTS of pics, but I've gotta run, so I'll post them later next week.

To the hospital we go... again.

Sigh.
Well after my first hospitalization post-tonsillectomy, I came home only to be met with the stomach flu. Needless to say, I ended up back in the hospital for a grand total of (in 1 week) 3 ER visits, 2 separate admissions, and 3 nights on the unit. I came home Saturday. What a horrible horrible week.

But the fun doesn't stop there, folks. Tomorrow (Tuesday) Arie will be admitted to prepare him for surgery on Wednesday. That will most likely be followed by three more nights in the hospital. Unfortunately the hospital he will be at is about 1 - 1.5 hours away from our house, so I won't be able to come home much at all to see my other kiddos. It's going to be a hard few days. I'm so scared for Arie, but confident that he will do alright. Prayer would be appreciated!

I'll update when we get "released"!!

I went back to the ER yesterday afternoon and was admitted. I was throwing up all evening. Turns out I have the stomach flu on top of the tonsillectomy, so keeping pain meds down and keeping myself hydrated was not an option. I stayed last night and was supposed to stay tonight too, but we don't have any help at home with the kids. Our neighbors have been lifesavers, but they all have kids of their own and obviously aren't able to just STAY at my house. My in-laws have a bar-b-q or something to go to and apparently think I should be feeling fine by now, so they aren't offering any help. Don't even get me started on that right now.

Arie will be having his feeding tube placed a week Friday. We were going to do it tomorrow, but I'm still in too much pain to devote all of my time to him, and Ben has to work this weekend to make up hours he's missed this week because of me. Arie will be in the hospital for 3-4 days. Lets just HOPE I'm better by then. From what I hear (from other adults that have had their tonsils out) the severe pain lasts about 2-3 weeks and then tapers off.

I'm off to take my next dose of meds!

Oh the pain.

If I was able to choose natural childbirth vs. an adult tonsillectomy, natural childbirth would win (and yes, I've experienced both). Lets just put it this way. I have been on enough pain meds to tranquilize a giant horse. In the PACU after my surgery on Friday I was given Morphine, Demerol, Dilaudid, Vistaril, Lortab, and Versed... plus a few others that I don't remember. Those eventually got my pain level tolerable so that I could go home.

Well, now, 4 days later, the Demerol and Lortab I'm on are making me vomit. So last night I went to the ER because I had NO PAIN control because I was throwing up all my meds, and I was beyond dehydrated. So I got an IV and was given Zofran (for nausea) and more Dilaudid. I was also given the option of being admitted, but since I have three kids and not much help from family, I "chose" to come home. I was given a new prescription for Oxycodone... and with that given new hope that my pain would be controlled AND I would be able to keep down whatever I manage to ingest.

At 2am I woke up in HORRIBLE pain. So bad that I could hardly breath. The oxycodone isn't' helping at all. I might as well be drinking water. So here I am, back on the meds that make me nauseous... the Lortab and Demerol. I'm just waiting to puke again. I'm so so miserable. I have the kids at home with me (minus Elaine who is in school). The ER doc said he would admit me at any time if I came back in because of the pain... problem is, dogs don't make good babysitters and I don't have any family that cane stay overnight for a couple of nights. Ben doesn't have any PTO left at work, so basically I'm up shit's creek without a paddle.

At least with natural childbirth it's over in a few hours.... my doctor told me this morning that I can expect to be in this amount of pain for 7 - 10 days. Only 3-7 days to go. Oh, and FYI- tonsillectomies are WAY HARDER on adults than children... so if you know anyone who will be getting one as an adult, HELP THEM OUT A LOT!!!! The amount of pain involved is unimaginable.

Fetal Alcohol Spectrum Disorder

After spending more and more time researching Fetal Alcohol Spectrum Disorder, it is becoming clear to me, my husband, and Arie's doctors that this is, in fact, the culprit to his lack of growth, feeding issues, difficulty sleeping, mild delays, and raging tantrums. He fits the mold perfectly.

While I'm super sad to know that this could have been prevented, I'm happy to at least have an EXPLANATION for his behaviors. I feel like now we have a starting point and we know which direction to take with help and therapy. Although Arie's birth mom drank alcohol during her pregnancy I hold no ill feelings toward her of course. In fact, we were open to alcohol exposure. Perhaps she was unaware of the possible outcome of repeated alcohol use, or perhaps it is social custom, perhaps she needed to drink to cope with her life situation at that time... who knows. All I know is that I'm blessed to be the one to love him daily and help him learn to work with his issues.

Anyway, I'm trying to find some good books to read about FASD (Fetal Alcohol Spectrum Disorder), FAE (Fetal Alcohol Effects), or ARND (Alcohol Related Neuro-Deficits). Any good links about this would be appreciated too! Also, are there other families out there coping with this?? I realize that some of you may want to keep this part of your child's "story" private, but I tend to look at it with a medical perspective. After all, it's a diagnosis that can effect many aspects of a persons life. I also don't think it's something to be ashamed of or hidden. I think it would be great if the families coping with this diagnosis could talk/ share stories/ share ideas and learn from each other!

Failure to Thrive, and a whole lot more.

Baltimore Aquarium September 2007


I have SO MUCH to write about... I'm just going to re-cap our summer, and then get into Arie's issues!

What a summer. I have been running around like a headless chicken ALL SUMMER LONG! I'm glad it's finally over, and SUPER glad that school has started. We had a summer filled with vacations, swim lessons, cheerleading, summer camps, and of course a nice long visit to Grandma's house! It has been one thing after another this summer, so I apologize to all of my friends who I haven't kept in contact with (like YOU Kelley!!)... I hardly have time to pee.

Anyway, Elaine has started Kindergarten and is doing well. The first few days she had some trouble "listening" and was disciplined, but I think she gets it now. I hope anyway. She has some new friends, and she is fitting right in. She is cheering for the county now. She LOVES it, and she always gets to be the "top" for the stunts, so she thinks that's cool. The only bad side effect of her cheering is that she walks around all day saying cheers and chants to herself. She looks a little psychotic, but then, don't we all? She (and Micah) took a month of swim lessons. We started Elaine off in Pre-school II, and by the end of the month they had moved her up 4 levels to Level 4. She swims like a fish, she can jump off the diving board, she can retrieve objects off of the bottom of the deep end... she is amazing to watch!

Micah started pre-school today. It's just right across the street, so he knows everyone in his class really well. As expected, he did fine. He's had a pretty uneventful summer. He went to the ER a couple nights ago with a high fever (104) and LOTS of vomiting, but he's doing just fine now. He didn't do quite as well as Elaine in the pool. In fact, he cried A LOT and acted like he was dying... but we persisted anyway! He's such a big boy now, and he is FINALLY fighting back with Elaine. We always told her that "one day her brother would fight back"... well, the time has come! Unfortunately, his "fighting back" doesn't end with Elaine, and he has turned into a bit of a bully. Oops.

Onto Arie. Well... today was the "big appointment" with the pediatric gastroenterologist. We have been waiting for this for MONTHS. Arie is hardly gaining weight, and now he is not really growing much taller (he's 16 months old now and his W= 18 lbs, H= 29 in). We feel like we're not getting anywhere with the feeding clinic at Children's... they have sort of dropped the ball on Arie and he's continuing to fall off the charts.

Our doctor today was amazing. I started by explaining Arie's history (his in utero history as well as his medical history in Korea) and went all the way up to current time. I told him how we've been instructed to change formula a gazillion times, how we are no longer giving him dairy and soy (just IN CASE he's intolerant to them... we know he's not allergic), and how his stool is so acidic that is burns right through his skin. I also explained that I was really unhappy that he hasn't been tested for much. Yeah, Children's did some lab work and an upper GI/Barium swallow, but it didn't really tell us much. Why haven't they continued to look for a cause to Arie's lack of weight gain and his "Failure to Thrive" (which, by the way, is his OFFICIAL diagnosis).

So, the doctor told me the following (in so many words): He believes that Arie's eating issues ARE IN FACT behavioral (no surprise to us), and not technically "medical". He thinks that all of the tests we are going to do over the next two weeks will be negative... but we should do them anyway to rule out things such as Celiac Disease, Cystic Fibrosis and Crones Disease. Well, you ask, why does Arie have a behavioral eating disorder? Possibly because Arie was exposed to a significant amount of alcohol in utero. He doesn't have Fetal Alcohol Syndrome, but he does have Fetal Alcohol Effects. The thing with FAE is that there is no way to say FOR SURE that the exposure to alcohol is the culprit of his Failure to Thrive, but most likely (in Arie's case anyway) it is. So over the next two weeks Arie will have more blood work drawn, have an endoscopy (tube with a camera down the throat), and a sweat test (to rule out Cystic Fibrosis).

Because of Arie's eating problems, he is becoming increasingly malnourished. At one point, a few months back, he was "marginally" meeting his caloric needs, but now he no longer is. Even with all of the supplementing with Duocal and calorie boosting with his formula, he's not taking in enough. In fact, because of all of the carbs he's getting from the Duocal, the doctor is fairly confident that THAT is the reason for the acidic stool... carbs turn into sugar which then decrease stool pH. So, after all of the tests, we will be switching him to a different formula (perhaps Pediasure?). Currently Arie is 16 months old and still on Alimentum... an infant formula. Back to the malnourishment. Arie has ALWAYS had trouble gaining weigh, but he was still growing in height. That is a good sign. Well now his height is starting to taper off which means that he is moving further into a stage of malnourishment. So, in two weeks, Arie will be having a feeding tube placed in his stomach. This will allow us to insure that he is getting proper nutrition, and at the same time we can work with the therapists to get him to eat better/more. He would have the tube placed sooner (the Dr. suggested tonight!) but I am having my tonsils removed on Friday, and that's supposed to be a pretty painful recovery. Ugh.

Anyway, I know it sounds awful, but I am SO RELIEVED that he will be getting a feeding tube. It has been so hard to watch him melt away. Although some meals go great, many are a struggle filled with tears from both of us. I am constantly worrying about him and his health. I am at my wits end, and I just can't do it anymore. It has been a rough year trying to get him to eat. Unless you've lived it, you have NO IDEA how frustrating it is. Now that his height is slowing down (too much) I know this is the right decision. The doctor we are going to is one of the best in our area, and I just feel like a big weight has been lifted off of my shoulders.

He will be in the hospital for a couple of nights, and hopefully all will go well. The tube will stay in for a least a few months, possibly a couple of years... who knows. Basically is is inserted sort of near his belly button (a few inches over) and we will be injecting some form of liquid nutrition directly into his stomach. HE will also be able to eat normally too.

I'll be sure to post when I have a surgery date! Thanks for all of the thoughts and prayers! I'm so glad to finally see a light at the end of the tunnel.