58 ml/hr and Holding

Well, we've made it to 58. Just 12 measly mls/hr to go. Unfortunately, the last week has been difficult for Joshua. He recovered from the flu just to get double ear infections. The combination of illnesses, antibiotics and rate push on his feeds has left him very bloated and uncomfortable. We've started a g-button administered antibiotic to combat any possible bacterial overgrowth. I've also raised the amount of oil of oregano. Hopefully one week of this regimen will have us back to where we were. Joshua is feeling much more like himself. It's always heart wrenching to see your child sick and miserable. Please remember us in your prayers... still have our sights on 70!

70 mls/hr

There it is. 

Our goal. 

Our prayer. 

If Joshua can make it to 70 mls/hr of formula over 16 hours each day without trouble, his G.I. is ready to pull out his central line. 

We were handed this wonderful news monday at a routine checkup. He's at 51 mls/hr today and with consistent progression, we're only looking at 2-3 months left of TPN. Incredible! Joshua's surgeon warned us long ago that it may take years and years before this would happen and I've always been prepared to take his TPN and central line on into his preteen years. 

God please continue to heal my baby's body. If his central line is gone, so many threats are eliminated from our day to day lives. 

70 mls/hr, here we come...

Easy Does It

Friday April 28, 2006, hours after my emergency C-section, the Pediatric Surgeon walked into the room. Or actually it was more like floated into the room. He was an angel sent from God. Of course, I was pretty doped up on morphine! At any rate, my son is alive today, I believe, because of this doctor.

He was a man small in stature with the kindest eyes. Dressed in green scrubs still wearing his paper hat he walked up to my bedside. After introducing himself, the first words I remember hearing were, "This is bad." 

Wow, three words no one ever wants to hear from a doctor's mouth. My head is still spinning from the previous 2-3 hours. He told us things would be a roller-coaster ride from here on out. We would take two steps forward, only to take one back, sometimes three. The surgeon instructed us we were to take baby steps for a long time. Progress would be slow, but don't get discouraged. And lastly, looking at me he says, "You are going to become a nurse."

Without even thinking, I nodded my head and said, "Yes, sir." I was going to do whatever it takes.

Well, the good doctor couldn't have been more correct. This has been the longest roller-coaster ride of my life. Just when things go well, something creeps up from behind and pulls the rug out from under us. But, time has taught me much about Joshua. I don't pretend to be confident, but no backward regression is always an opportune time to try to push him. Each good stretch gives us a chance to raise his rate and encourage more oral intake. We've had lots of set backs, and I know there will be more.

But today. Today something's working. Maybe it's the new formula. Maybe it's the oregano oil. Maybe it's just Joshua's growth. God only knows. Slowly, but surely we're moving forward. Today I raised the rate of his formula to 49 ml/hr over 16 hours. For Joshua this is amazing! Even more amazing, last week, Joshua ate beef stew! He also ate an entire tube of Gogurt (yogurt for kids) and said "Ummmm!" while he ate! Tears welled up in my eyes!

What a long way we've come since that stormy Friday night. Each step forward is a miracle and a blessing. Thank you God for my Sweet Joshua, he's taught me so much patience!

So Far, So Good

We had our second day of Eating Therapy today and Joshua really responded well. He seems to like is therapist and is willing to "work" for her. He hadn't had too much trouble eating the easy things, but now we're off to the tougher stuff. Joshua's condition limits his diet of course. His GI would love for him to eat lots of meats. That has been harder for us. He can do deli slices of turkey, but chicken and beef throw him a curve ball. Tomorrow we're working on chicken strips, with breading. Maybe something like meatloaf next week? Or stew. Stew sounds good!

At any rate, it's time to sit down with Joshua's Dietician & GI to see if his higher rate in feeds (we're at a whopping 47 ml/hr!) and increase in oral intake will bring about a decrease in TPN soon. It's what we've been praying for.

May I have some more chicken?

As I have mentioned before, during the course of Joshua's first years, I've realized just how much I took for granted with my first son, Caleb. You read the "What to Expect" books and you're watching and waiting for each precious milestone. He latched on and is nursing well, check. He slept all night, check. He pushes up during "tummy time", check. He sits for a long period of time, check. Begins baby food, check. Crawls, walks, talks, etc, etc... There's nothing on that list that prepares you for having a special needs child. If there was, it would look something like this... Ticket for emotional roller coaster ride, check. New found personal relationship with God, check. Graduation from course on time management, check. Put all of your own wants on back burner, check. Keen understanding of a growth chart, check. Nursing 101, check.

So, at any rate, the cute little "milestones" are just a sadistic reminder that your child is not normal! Joshua was nearly six months old when he came home from the NICU for the first time. He wasn't even close to rolling over. Being on his stomach was painful and lasted all but five minutes. He still required support when sitting on his 1st birthday. Not long after he turned one tides began turning. We had a great stretch of good health and he made leaps and bounds. Finally, by 18 months Joshua was walking and saying a handful of words.

Much to our dismay, very few things made it to his mouth. At this stage Joshua would suck on his paci and drink a very small amount of water. Food didn't stand a chance. Someone made the mistake of telling us that there is a school of thought out there on force feeding. Some equate it to rape. The forcing of something unwanted into the child's body. Yah, you can imagine the impact that had on me pushing the subject. Our feeding exercises came to a halt! So much ground was lost in the months following. 

It wasn't until Joshua's GI told me that our only hope for Joshua at this point is to increase his oral intake. Here we go, I'm thinking! So, we start feeding therapy. In the beginning it was a group setting, hoping positive peer pressure would come into play. Kids like Joshua could care less what "everyone else" is doing. That was scrapped and we quickly moved on to individual sessions. In six weeks we made quite a bit of progress. 

We've learned something along the way that is quite profound. If kids aren't eating, they do not develop their speech. I never would have associated the two. But, it made sense. They acquire tongue motor skills by moving food around their mouth that will aide in their pronunciation. Well, as you might expect, with the increase in oral intake, Joshua began to talk. And talk. And talk. And the boy hasn't stopped! At 3, Joshua Blaine Southern finally caught up to all his precious milestones, including being on the growth chart curve!

So, here we are today, not at all where we hope to one day be, but a whole lot closer! Joshua's feeling great on average. We've seem to got a good mix of the right formula, right meds and our latest discovery, oil of oregano. What a difference! He's eating! Tonight he was given a small portion of my mom's homemade chicken pot pie. He ate the chicken out of it like it was going out of style. He asked for seconds, I smiled. He asked for thirds, you gotta be kidding me? Fourths, Fifths! He must have eaten a total of 1 cup of chicken when all was said and done. I never thought hearing "May I have some more chicken?" would bring me to tears. You don't find that in any book...

The Frustration I Feel

There are times I think back to when things were much simpler. Back before Joshua was born. I had no clue as to what it was like to feel the stress and frustration over your helpless child like I've now grown to know so well. I wish I could grab that girl when she just had one child and shake her. Parenting is so easy when everyone's healthy. I hope, if I can get anything across to anybody, it's that. Your babies are so precious. Don't take for granted what you have. You can read all the "What to Expect" books you want, but when it comes down to it, all you need to know is: have patience, be consistent and create special memories on purpose. 

I have to keep reminding myself of this. I'm at a place now where my "duties" as Joshua's primary caretaker sometimes interfere with my mothering. It's so easy to become resentful and overwhelmed, forcing everyone else in the house to pay the price. I can only be angry with myself for that.  It can be so hard to be as organized and productive as I need to be, to properly take care of Joshua without loosing the sweet, soft and easy-going mom that my kids need. I want to be such a different woman. My family needs it. I just don't know how not to get so wrapped up in everything being a certain way. Of course nothing in my life goes as I think it should. My house doesn't reflect it, that's for sure. That's one more thing that prevents my sanity. It drives me crazy when things are out of place. I want it all to be perfect, but I just don't have it in me at the end of the day to do it all. I'm all ready sleep deprived as it is. 

This is such a short time in our lives and I know in my heart that I need to just get over myself. The good Lord has gotten me this far, only He can take on my burdens. I just have to hand them over. So, Lord, please give me grace and tolerance and the ability to take the best care possible of Joshua and love my children as sweetly and patiently as I can.

I'm reminded of a poem I once read about dirty handprints and cherishing these little messes now, because it's only a matter of time...

It's a Tert!

This past Sunday something wonderful happened. Something that occurred only once before. Something worth celebrating, but not for the squeamish! Joshua passed  a somewhat solid stool. It was just amazing. I said, "Look Joshua, it's a turd!" His face filled with pride, "A tert! There's a tert in my Pull-up!" Don't think I didn't consider taking a picture or saving it somehow! But, I didn't, relax. This was huge for us. I called Justin in from outside to show him and we hugged,wiping the tears out of our eyes. Only once before did he have something like this happen. All of his stools are always so loose. It breaks my heart. Well, we haven't had this experience again since, but hopeful there will be more "terts" in our future. Yeah Joshua!

Cultivating Talent

Okay, maybe if I commit to this publicly, I'll actually go through with this. I think it is so important to encourage children's God-given talents. Not so sure if my children's is art, but mine was, so who knows? So, anyway. I'm am vowing here and now to not discourage my boys when they ask me if they can't paint, now matter how big the mess may be, or how much I don't feel like getting everything out.  Oh if I just had more space... At any rate, enjoy Joshua's first attempt at painting. I think it's beautiful!

Thank you Cook Children's Child Life Staff for opening my eyes to this.

Where is my Bedtime?

Recently Joshua has shown lots of interest in potty-training. To all our surprise, things are going quite well. Watching as he beams with pride, my heart just breaks. The extent of his chronic digestive issues are so much more evident when not contained in a diaper. It never quite hit home until the first time I witnessed it. But, Joshua just as pleased as can be, loves the independence. Then comes bedtime. Four times last night between 9:00 pm and 12:30 am he calls me in the room so he could go potty. So we begin the process of turning off TPN and Lipid pumps, sterilely securing the end of his tubing. Turning off his feeding pump and unhooking tubing at the g-button. He scoots down off the bed, heads to the bathroom and pretty much takes care of things all by himself. He cleans his hands, puts his pull-ups back on, and gets back into bed. I clean off his end of the central line, re-connect the TPN and Lipid tubing, and reset the pumps. I reconnect his feeding tubing and turn his feeding pump back on. This is all well and good, until an hour later when we repeat the whole process. And then an hour after that. And then once more. What to do? I certainly can't discourage him using the restroom. But I have to wonder, how much of this is in his control?

Who knew poop could run someone's life!?! I'm desperately in need of sleep!

Home, Finally

Well, as of Sept. 2nd and after 6, count them, 6 infections Joshua is HOME! Poor baby had to go through 5 IV sites and countless blood draws. He finally has decided being in the hospital isn't all fun and games after all! He's doing alright. The IV antibiotics have been rough on his system. Today was the last dose, so hopefully things will get back to "normal" What's that?

Still in the Hospital

Well, here it is two weeks in hospital. Hopefully the new central line is placed tomorrow and hopefully they send us home on IV antibiotics this week! That's what we're praying for. We've ended up with 4 additional infections and we're so ready to get home and get back to normal. There's only so much normal you can make of the hospital. Although Joshua is such a good sport. He's made so many friends, the hospital staff loves him, can you blame them?

Joshua's come down with a yeast infection in his central line. Yeast is naturally in everyone's digestive tract and unfortunately, sometimes ends up in the bloodstream in people like Joshua. It colonized on his line (which is made of plastic and very attractive to bacteria and yeast.) The surgeon pulled out the old line and they want a complete course of antibiotics before they place the new one. We're looking at another week or so in hospital.

Pray that we stay infection free and that we can better control bacterial overgrowth in his little system.
I'll let everyone know when surgery date is scheduled.
Thank you for your prayers,

Dana

Feeding Therapy

We've been accepted by Baylor's Our Children's House to enter their feeding therapy. It's an intense look at why Joshua doesn't want to eat, what Joshua will eat and what he should eat. We are so excited to be receiving this help! Who knew eating would be such a battle.

Florida or Bust...

It looks like we are going to make the trip to St. Petersburg, FL after all! The Oley Foundation is having their annual convention at the end of this month and we should be able to make it! Check out my link to learn more about it. Pray for our trip and that we come away from the convention with some knowledge or medical connection that will make a difference in Joshua's life.

At Cook Children's Again!

Well, here we are. Admitted once again, but it has been over a year since Joshua's last Central Line Infection. That's one a year so far. Much better stats than we were warned about in the NICU way back when. Joshua's short gut has exposed his blood to E-Coli which has now colonized on the tubing in his vein. We are praying it clears with antibiotics so that he doesn't have to have a new line put in (surgery!!!) Being that he's three, life as a patient who doesn't know he's sick is sure interesting. The buttons on the bed are quite fun and heaven forbid you get real into anything on t.v. cause the channel is likely to change any minute! It looks like we're here another 2-3 days at least too.

Pray for him and my patience!

To be scared, or to be informed?

In a situation like this, you make a choice on how to handle things. You throw yourself the biggest pity party known to man, or suck it up, focus only on the moment in front of you and learn all that you can about everything! Immerse yourself in it all. Just what is an ostomy and what are blood gasses? Who's an RT and just what is a direct bili? Somethings took a while for me to get a grip on, so I found it easiest to obsess over what I did understand. I knew that kid's weight, temperature and amount of bowel movements at any given moment. Even if I wasn't there for each shift, I knew what nurse was caring for Joshua at each shift change. Shift change, that's an important thing to understand and respect. I knew when each of his doctors usually rounded, always try to plan hospital visits around those times! The unknown can be mortifying, I wasn't going to let it get the best of me!

Joshua's 3rd Birthday

For his third birthday, Joshua wanted to go to Cici's. He had a blast!

Welcome to the NICU

By the next morning I was ready to go downstairs. Very sore from surgery, anxious and scared out of my mind, I entered the NICU not sure what to expect. I scrubbed in for what seemed like the longest three minutes in history. 4A, 4A, 4A, Justin was carefully pushing me in a wheelchair and we were looking for room 4A. There it was. There were three beds in that room, Joshua was in the last bed on the left. He looked beautiful. Much, much bigger that all the other babies in there. I almost didn't notice all the tubes and leads. I decided then and there that I wasn't going to let this get the best of me. I was going to conquer Joshua's situation with knowledge. I had the nurses explain everything to me. Why does he need this? For how long? How do you care for it? I wanted to understand each and every tube and surgery site. Maybe it was denial, maybe just a coping mechanism? I don't know, but it helped. I couldn't get caught up in the terror of what could happen. I had to take it one day at a time. His recovery wasn't an option, it was going to happen. How long it would take would be my only unknown.

A Routine Appointment

Even though I knew I wasn't carrying a "normal" baby, the pregnancy went smoothly. I was seeing a high risk doctor twice a week and it got so routine that I wasn't having anyone come with me anymore. We saw on sonogram that his small intestine that was left inside his body was extremely dialated, meaning the bowels were blocked off at some point. The doctor wanted me to deliver early so we had steroid shots twice to improve the baby's odds at not having respiratory issues. That friday I was in for yet another "routine" appt.(by myself) when once again during a sonogram the room got errily quiet. He tells me he doesn't like the baby's heart rate and wants me to go over to the hospital's maternal observation. He has a nurse walk me over right away. When we get to the floor, a very stern old nurse scouls at me and asks why am I walking? They push me into a wheel chair and take me into a delivery room. What? In no time nurses are bustling about me asking me questions and stripping my clothes off. What is going on? Before I know it, I'm in a bed with an IV started and no clue why. I'm thinking, "Wait, y'all are making a huge mistake. You've got the wrong person!" Finally, one of the nurses asks if I'm there by myself. When I say yes, she gives me a phone to call someone. It's a miracle I got anyone's phone number dailed. I got a hold of my mother-in-law, my mom and my preacher. Justin couldn't be reached. I've never been so scared in my entire life. Only twenty minutes had passed from when I was getting my "routine" sonogram to this point. Suddenly we're leaving the delivery room and I'm being wheeled into an operating room. I can still remember how cold and white it was. I layed there looking up at the ceiling while nurses counted utensils. I couldn't even cry. It was so unreal. I started thinking, I'm so alone, where is everyone? No came. Panic was beginning to set in. Almost as if I heard a voice, something told me, "Get it together, you're not alone." I've never been closer to God than that moment. A peace settled over me that can't be explained. The surgery was a blur, but I do remember tugging and pulling and a heaviness on my chest. In no time at all Joshua was born. It was an eternity before a nurse told me to turn my head to the right so I could see him as they wheeled him out the door. Oh, my baby.

From the beginning...

For those that don't know my son Joshua...Like everyone does, I went to the OB at 20 weeks to find out whether I was having a boy or a girl. Laying on the sonagram table, I could see on the technician's face that there was something wrong. The words, "There's a problem." didn't help much either. Justin and I were left alone in the room for about five minutes as the tech went to fetch the doctor, being that they aren't allowed to say anything. The rest of the day was a blur. The word "problem" kept circling my head. Gastroschisis was actually the terminology. Gastroschisis is a 1 in 5,000 birth defect where the small intestine is formed outside of or protrudes from the abdoman at some point around 10-12 weeks gestation. No one knows why it happens. I thought my world had ended...