How do you eat an elephant? ........One bite at a time.

I suck at blogging....

2010-12-08T17:04:00.000-08:00

....but I'm really great at Facebook? Oh well, we're in the hospital (AGAIN, but I digress for now) and I finally figured out how to hack into the wifi, so I will be productive and make an actual post!

LOTS has changed since June... Caleb turned two in October and is just as wild as can be. He is SO very smart (which I give credit to ALL of our hospitalizations this past year--- we have nothing better to do than LEARN!) He knows all of his letters (upper & lowercase), #1-20, shapes, colors, body parts, clothing, and animal names/sounds. As a teacher, I'm pretty impressed with his cognitive abilities! What he lacks in the digestive tract, he makes up for with his brain! :-)

We've had some really rough patches lately.... Caleb got his new CVL in September and it's wonderful. It's actually a PICC line, but they're use it this way because it's unbreakable (or so they say!) He's walking all over the place and uses his backpack brilliantly. In October we had a HUGE scare with his CO2 levels dropping drastically, which ended up in about 3 weeks of hospitalization, including 5 ICU stays. It was awful... he was completely unresponsive and it was basically like he was in a coma. It took boluses of straight biocarb to "wake him up" and straighten out his levels. Finally, labs were sent out of state and he was diagnosed with d-lactic acidosis. His formula was changed to Pulmocare and he is doing AMAZING with it.... in fact, he tolerates it better than the Elecare he was on, so there's our silver lining. In an attempt to diagnose why his CO2 was dropping so rapidly, his TPN was almost doubled, so I feel like we've taken several steps back. We were hoping to see his actual nutritionist this week, but then he landed back in the hospital for a line infection. So, hopefully we're on the mend and we're not here for Christmas!

Despite all of that, he's doing really well. He's still at a rate of 82mL/hour for 17 hours on the G-tube, but we're hoping to get permission to start increasing that (we generally go up 1mL every 3 days, but we haven't for a LONG time due to surgeries, antibiotics, etc.) His TPN is now at 822mL/10 hrs, so I'm hoping to get that back down to where it was sooner than later. But in the meantime, we're just glad to be happy & healthy!

Here are a few new pictures of the little man:

He's a Mickey Mouse Clubhouse JUNKIE.

PedsCare Zoo Night

Strolling Along....

Our Little Family (with one more on the way!)

Four months without a post....

2010-06-22T18:38:00.000-07:00

....not because things are bad, but because they're insanely BUSY! Where do I even begin?

Caleb is doing awesome.... he's 20 months now, is crawling ALL over the place, pulling up on everything, crusing the couches and anything he can hold onto, will walk with assistance and basically is a holy terror (which is a good thing!) He's now only taking 10 hours of TPN (584mL) and is running at a rate of 63mL/hour for 17 hours of Elecare through his G-tube (which is double after reading my last update!) He's babbling and starting to use some sign language also. HE IS ALLLLL BOY!!!

He ended up hospitalized again for 9 days in April for another line infection.... after 4 months infection free, it was very disappointing. He's also been getting frequent double ear infections, which we can't decide is because his gut doesn't absorb the antibiotics correctly to properly clear it up or if he's just really prone to it.... who knows if we'll ever know, but we're going to an ENT in August and will most likely end up with tubes. Thankfully I've learned his symptoms now and we don't rush to the hospital because of his slight fever (assuming all the other things are in check!)

It's finally the summer (the best part of teaching) and we're going full-force with therapies and appointments. He's also going to be starting the Little Bites Feeding Program (FINALLY!) in addition to his speech therapy & OT that works on feeding. NOTHING is working.... he is finally starting to tolerate some ice water from a sippy cup, but it's inconsistant and still such a small amount. He's still a joyful little boy & such a free spirit, but it's definitely getting harder the busier he gets to get him hooked up, etc. The backpack is working brilliantly, but it's causing some issues with his back. It's such a Catch 22 with our kids!

Well, I guess that's all for now... I'll try to post more and actually figure out how to network with some people on here! Until next time....

*I wanted to post new pics of him, but the website is being cranky!

Time Flies....

2010-02-15T16:04:00.000-08:00

Caleb is 16 months today. WOW.... though I have not been present for his entire life, I'd like to think that it's quality over quantity. Though I did not give birth to this beautiful little boy (and he's probably so gorgeous for that reason alone!) I'd like to think that I've had to endure the same feelings and emotions that any mother has when she learns that something is different with her baby. Since such a falsified picture was painted of Caleb prior to his placement with me, I feel like I've had to go through the same stages of acceptance as any biological mother does. Of course, it doesn't make me love him any less (if anything, I love him more!) but all the plans I had have had to be altered and the direction our life was headed has just taken a much different direction. I wouldn't necessarily say that it's worse, just different.... unexpected.

Caleb is truly a joy to care for. He has the best little personality and is so funny and easily amused. Some of our best moments together are when I'm preparing and hooking up his TPN... it doesn't even feel like work majority of the time because he just fills the entire experience with such happiness. Okay, not all the time, but most of the time. There will always be nights that I just DON'T feel like mixing all of it up and purging that darn bag and so help me if the machine starts beeping, but those days are becoming few and far between.

I have no idea if I've been experiencing the grieving process from learning the truth about Caleb's future and what's in store for us, but that's what it feels like. When I lost my first son, I bought every book at Barnes & Noble about losing a child and how to cope with such indescribable pain. I felt like no one understood what I was going through and quite frankly, I had no idea what I was going through. All I know is that it hurt.... badly. One thing I learned about the grieving process is that although there are stages, no one goes through them in the same exact order. Right now, I feel really confident in my ability to care for Caleb and to ensure that I'm doing everything possible to make sure he has every opportunity to achieve. I'm focusing on the positives: 37 days out of the hospital, he's waving "bye bye" now, he's starting to tolerate a TAD bit of vanilla Elecare by mouth and is showing an interest in applesauce, he's so close to crawling that it's scary, he's being brave and exploring his surroundings more, his feeds are running strong and steady, his throwing up has decreased a little, despite the fact that I gave him an AWFUL haircut, it will grow back, and the best--- every time I pick him up, he gives me a hug. I know there will be ups & downs, but I can only hope that the ups start outweighing the downs.

"While we try to teach our children about life, our children teach us what life is all about." -Unknown

He is my little Romeo!

Wearing a hat, to cover up the awful haircut I gave him!

Lazy Sundays

2010-02-07T05:59:00.001-08:00

Well, there really aren't lazy Sundays with Caleb, but currently I'm being lazy while he terrorizes the play area, so that has to count for something!

Things are going pretty well for now. He was put on Senna to help his motility issues and it's working fairly well. He still does a lot of vomiting, but it's nothing compared to what it was now that he's having fairly regular BMs. He's also tolerating 30 calorie Elecare at 34 mL/hour.... woot! His nutritionist said there wasn't anything else she could do for Caleb until he started pooping more and puking less, but I'm going to call her tomorrow and see if she at least wants to bump his speed up a little. His labs came back on Friday and showed that his CO2 levels are low, which could mean that he's dehydrated (I don't think he is) -- so we had to re-test them STAT. Hopefully it was just a glitch in the test and they don't want to bump up his TPN.

His biopsy for Hirschprungs Disease is on February 15th. We have to arrive at the hospital an hour early so that he can be given IV antibiotics prior to the test since they'll be entering his colon. I'm not sure how long it will be until we get the results back, but hopefully we won't have to wait too long. I also need to call to find out about his MRSA results. One day they randomly tested all of the kids who were in the hospital by swabbing around their g-tubes and Caleb came up positive (most of the kids in there did) -- he has to have three negative cultures before he can come off contact precautions when he's admitted. I'm being very proactive about it because when he is in the hospital, it's awful being confined to the room. So, his pediatrician is doing the swabbing for us. We did our first one a couple of weeks ago, but I haven't heard the results. Chances are I was probably supposed to call and didn't. I also need to return the call from Boston about taking Caleb up there over the summer. Oy vey, I need an entire business day to make all of these calls!

Caleb is REALLY getting brave with his mobility! He's finally starting to put himself on his tummy and stay there, push up on his arms, attempts to pull his legs up and then scoots forward. He's also starting to pull up and he's spinning around when he's sitting. I feel like things are about to get ridiculously difficult to manage! I just found a harness at Target that has a small backpack on it. There's no way he'll keep his Entralite Infinity backpack on at this age (plus, it's too big for him), but this one looks perfect and straps across his chest. We really need to start practicing now so once he's really on the move, he's already accustomed to wearing it. We'll see how this turns out!

That's really all that's going on now.... back to wild baby duty!

New theory?

2010-01-27T14:03:00.000-08:00

Caleb doesn't qualify for the STEP procedure.... he doesn't have enough length. Now his team wants a biopsy done to test for Hirschprungs Disease. *sigh* After hours of online research, it makes sense. My biggest worry is that if he does have it, the treatments that seem effective for it won't work with him because of his lack of gut. We go to the GI team tomorrow and I'll definitely be showing up with my handy dandy notebook full of questions! Thankfully, they're a patient bunch.... although I know they dread when I walk in! Here's to you, little man.... I'm doing everything I can to make sure you have the VERY BEST quality of life!

Tsunami's of Vomit.

2010-01-25T18:52:00.000-08:00

I'm trying very hard not to lose hope that one day the input will be greater than the output.

Pay no attention to the "hospital property" printed on that pad! :-)

I'm determined to figure this out....

2010-01-17T15:51:00.000-08:00

....which is two fold.

First, I have no idea how to use this website to network with other families. I've always considered myself somewhat computer savvy and now I feel blinded by the other beautiful pages and my lack of ability. Oh well, one day I'll be able to dedicate myself to making ours look better and finding other families! Until then, I'll just blog to myself.

Second, I'm determined to figure out a new method to our madness. Caleb has always been a vomitter instead of an excessive BM-er, which from what I'm told by his team, is the opposite of what he should be doing. When I say he vomits, I really mean that he ERUPTS like a volcano. We've literally been in Target and he's sprayed an entire aisle, cart full of items, myself, his sister, EVERYTHING. I didn't even know where to start when it came to cleaning it up....

For the most part, he's only having these eruptions at night. I've changed everything imaginable to try to help this problem, but nothing has worked. During his last hospitalization, we saw a new GI doctor who was on call and she was FABULOUS. She explained that right now his bowels are so dialated, that it's almost creating a bowl like shape. We pump his formula in, but since his bowels are not contracting normally, he cannot push it out, so he fills up and eventually has several eruptions. She explained that his body is on the schedule of being "full" at night, that it really has nothing to do with the time of day or the fact that he's sleeping. He's currently taking Milk of Magnesia to help increase his BMs, but I think he's building up a tolerance to it or he's getting more and more dialated and it's really not affecting him in the same way. When his BMs increase, his vomitting decreases... it's got to come out somehow! Last night, I windowed his feeds (he's currently doing 18 hours now on his Elecare, at 30 calories, running 32 mL/hour) and gave him 3 hours off during the night (from 11pm-2am). He woke up this morning in a CLEAN BED, which has never happened before! I was so excited! But then, he erupted several times today, which he hadn't been doing. Oy vey.... I don't think it's a fair trade for him to puke during the day instead of night. At least at night he's confined to a crib so the clean-up isn't as severe. Plus, I finally broke down and I'm using a night time nurse since he's been hospitalized so much lately and keeps coming home with a slew of IV antibiotics and we're trying to many new feeding regimens through the night. I became completely drained (and ill) from having to get up hourly with him and constantly worrying that he was going to aspirate on his vomit. Although the adjustment of having someone else in the house has been difficult, it's worth it to get at least a little sleep at night.

We're also waiting to find out if he's a candidate for the STEP procedure. He's definitely dialated enough, we're just waiting to determine if he has enough length to make it worth it. Any thoughts on the STEP procedure? Of course it sounds amazing when the surgeons describe it and when I look at it online, but I also know by now that the grass isn't always greener on the other side.

Until next time....

Introduction

2010-01-12T18:10:00.000-08:00

My name is Jennifer and I live in Middleburg, Florida (right outside of Jacksonville). I have two (adopted) children and I am a medical foster parent, though I'm currently not taking any other children. My daughter, Darla, is 13 years old and deaf-- she has a zest for life and a heart of gold. My son, Caleb, is 15 months old and has short gut/short bowel syndrome. I've been wanting to start a blog on here to network with more families of children with short gut/bowel syndrome, but I wanted to wait until Caleb's adoption was finalized, then we had five hospitalizations and time slipped away from me. With that being said, I'm starting this blog by including a write-up I did on Caleb for my family and friends. I've also included some pictures, because let's face it--- they truly speak a thousand words and we all like to know who we're networking with. Again, I'm really looking forward to meeting some other SGS/SBS families to share ideas with, offer/gain support and to truly find others who know exactly what we're going through.

Caleb's Story

Caleb is a sweet-natured, vibrant, 15-month old little boy. He was born prematurely and addicted to cocaine, but was otherwise healthy. Being a premature baby, he was at risk for developing necrotizing enterocolitis (NEC) which affects about 10% of babies born prematurely and weighing less than 3 lbs. This awful infection attacks & destroys the majority of the digestive tract (intestines, colon, bowels—they’re called a number of things!) and unfortunately, they have to be surgically removed. Although this is not the only way that children can develop the condition that Caleb now has, it is one of the leading causes—which is sad because it’s not something that a child was biologically conditioned to have. Caleb is now diagnosed with “Short Gut Syndrome” or “Short Bowel Syndrome” – which seem to be used interchangeably. With that being said, during Caleb’s surgery, over 90% of his bowels were removed, leaving him with only 9cm and one of the shortest “short gut kids” around. In speaking with a GI specialist this past week, I learned that the average baby his age has approximately 200cm of bowels and the average adult has around 800cm of bowels, so as you can see, Caleb’s case is very severe. With such a little gut, his body is not able to tolerate or absorb the typical nutrition that both you & I can, which leads to a whole slew of problems.

Despite all of these complications, Caleb is cognitively on track. He babbles (constantly!), is interactive, will give hugs, kisses & high fives on command, and loves attention. Physically, he is behind because he lived the first 6 months of his life in the hospital while they were trying to manage his care & keep him stable, and also while they were trying to find a medical foster home that was willing to take him. But he continues to make strides every day physically and there’s no doubt in our mind that he will catch up. His physical therapist said that we really can only compare the time that he’s been out of the hospital to how he’s functioning developmentally, so after living his first 6 months of life there, he really should only be able to do what a 7-8 month old is doing, which he is. Caleb is able to roll over, sit unassisted and is starting to pull up on the crib. Thankfully, upon his first discharge from Wolfsons, he ended up being placed with the wonderful family that both of my other children lived with prior to me adopting them. Knowing that I wanted to adopt again and felt ready after allowing some time to pass after losing Kevi, his foster mother called me the day that she picked him up from the hospital and said, “I have your new son.” I didn’t even have to meet him to know that I already loved him! Of course I met him and of course my instincts were right, I already loved him and knew that I wanted to provide him with a forever family. We had a turbulent summer while I completed all of the paperwork & training, underwent back surgery from a car accident I had in April, prepared to start teaching at a new school and dealt with some other drama from a previous foster child, but I continued visitations and learned absolutely everything that I could about Caleb’s intensive care, while falling more in love with him each & every day.

Currently, Caleb requires all of his nutrition via a broviac central line (basically a permanent IV in his chest) and a g-tube (a little “plug” in his stomach). His TPN (total parenteral nutrition thru the central line) runs 14 hours per day and three times a week, he is also infused with lipids (fats) over the same 14 hours. Although having this line and type of nutrition is ultimately what is keeping him alive, it’s also very risky because it can cause significant liver damage and the line is very susceptible to infection from the bacteria that lives in his gut (which is what has hospitalized him so much recently!) Additionally, he receives formula via his g-tube over 20 hours a day, although it runs at such a low rate, he gets less than 20 oz. per day.

We see his GI specialist & nutritionist every two weeks to manage the levels of his TPN and to make adjustments to his formula intake. We’re trying very hard to continue to increase his calorie intake from the formula and build up his tolerance level, but we are kind of “stuck” right now at his current rate. Over the past few months, I’ve been told that once we get Caleb to 75% of his caloric intake by g-tube and 25% of his caloric intake by mouth, that they’ll remove his central line. Currently, Caleb is taking approximately 50% by g-tube, though we continue to struggle daily with his oral eating skills because he lost his instinct to suck from being such a sick infant. His nutritionist truly feels that he will lose his central line around his second birthday, so I’ve been so thrilled that the end is somewhat in sight, although we were given much different news this past month at Wolfsons. His GI specialist told me that due to the shortness of Caleb’s bowels, that he’ll ALWAYS be TPN dependent unless he undergoes a transplant surgery of the bowels & possibly liver. I was shocked and crushed… this was not in our plan! I told him that he must be mistaken because the nutritionist really felt that Caleb was making such tremendous progress and he said that he’d love to see Caleb prove him wrong, but not to hold onto that idea. I felt (and am still feeling) a whirlwind of emotions…

When I was upset & talking to a friend of mine about this, she said “well you chose this for yourself, you made the decision to adopt him…” and it felt like such a blow. A few weeks ago, his nutritionist and I were having a friendly argument about Caleb’s care and she asked me “do you ever think that Caleb was more than you bargained for?” and I said, “NO!” Although managing Caleb’s care is very difficult at times, I wouldn’t change my decision for the world. Yes, all the information that I was originally given was wrong, so the plan I created for us has had to change significantly, but the same thing could have happened if I gave birth to Caleb. I would have had to NOT have met or ever heard about Caleb, so that I wouldn’t know what I was missing, if that makes sense. I hate that people feel that what we’re going through and what I’m feeling should be less since he’s adopted… it reminds me so much of how so many people thought my grief over losing Kevi should be less since he was adopted. Though the journey with Caleb is going to be pretty intense, I’m up for it… all of me. Though I’ll probably break down at times, I deserve it—as any mother would. I refuse to lower my expectations for Caleb based on what the doctors say because when you lower expectations, you lose hope and he deserves so much more than that.

So, that’s a little bit about Caleb in a nut-shell. Despite all of his medical needs, he is absolutely a joy to have as a son and I know that Darla adores having him as a brother, although that might change once he hits the toddler years! He has touched so many lives already and continues to do so on a daily basis, which is such a beautiful thing to witness. Embarking on this journey with him truly makes me realize that we can plan, schedule and prepare for so many things in our lives, but that ultimately, it is God’s decision on what happens next and some times, we just have to roll with that and do the best we can. There are going to be trials and tribulations that we’ll have to face and how we handle them is up to us. All I do know is that I’m not giving up on Caleb— not now and not ever.

Now, onto the cuteness!

Caleb James

Our Little Family

Darla & Caleb -- Halloween 2009

The eyes that keep me going... (especially when having to bathe a baby with a central line!)

Caleb's Adoption Day -- Making it OFFICIAL!

Sibling Love