Joel On Paper

A friend of mine tonight asked for Joel's diagnosis, and I'm not sure if I've actually given it all out at once. Joel on paper can sound a little scary, but at the same time, when keeping up with the progress he's made so far, it's exciting to see him on paper and think: that's not Joel anymore :)

Joel's Diagnosis:
Transposition of the Great Vessels
ASD & PDA (atrial septal defect & patent ductus ateriosis)
VSD (apical muscular ventricular septal defect, surgery not needed)
Grade 3/Grade 2 bilateral head bleeds
Congestive Heart Failure
Convulsions in newborns
Lymphatic Clots
Multiple Venous Thrombosis
Obstructive Hydrocephalus
Chronic Pulmonary Hypertension
Pulmonary Embolism (lung clots)
Atrial Tachycardia
Chronic Respiratory Failure

Tuesday was another awesome day of appointments in Tacoma. Joel went through a lot and he slept through the night and most of yesterday....it wiped him out. First up was neuro. Dr. Korol said that his phenobarb levels were low when we left the hospital (17 out of a range of 15-40,) and he's gained 3 1/2 pounds since then. There's a good chance that the phenobarbital he's on (for seizures) is at a theraputic level and may be dropped or weaned soon. We're waiting until the results of Friday's EEG first to see if it shows that he's still proned to seizure activity. My prediction is that Friday night, Joel's phenobarb will be getting autographed...with a DC on the front...(discontinued :)
Feeding/Speech didn't go as well. At 4 months, babies can start deciding to suck on a bottle at will, versus by reflex. Since Joel never had to figure that out before now, he's deciding that he'll "pass" on taking a bottle...regardless of the taste of the contents. I was a little bummed, seeing as bottle feeding is fun for the family. I love getting the kids involved with new babies that way. BUT, maybe I should pick my battles. He takes liquid from a syringe just fine, so I think we're going to start focusing on him getting ready to take food orally (by spoon eventually.)
G.I.: Mimi wasn't happy with the amount or consistency of his stools. Weight gain is at goal, (YAY!) but we discontinued reglan to reduce his motility. I was soooo happy to get him off of this medicine. I took it for lactation (it has many uses) and it made me shaky with no energy...among other unpleasant side effects. Bleeeh!
Our medicines at 8am went from 11 prescription meds to 4. We're on our way, people! :)

My aunt Debbie shared our blog address with some people from her prayer group, and I realized that we needed more pictures on here to share with all of you that have been praying for our little guy! He got a new playgym from a garage sale yesterday. Two dollars can buy more fun than you'd think, he's having LOADS of fun grabbing at his new toys that dangle from it!

Rock My World, Baby

Welcoming a child into the world is a life-changing experience. I remember realizing that after Connor was born. From the moment we drove away from the hospital, it was as though we had left part of us there in that room... it's neat to look back on those days, those thresholds being crossed. My transition onto "Planet Mom" was pretty rough...infact I'd say I entered it kicking and screaming. I had wanted a baby brother for Logan...I was unsure of my new role of having to end bad habits and act like an adult. It's been five years since then, and with the kinks worked out, I was thoroughly ready for another package to add to our growing family. Even with the challenges we've faced with Joel, I didn't prepare for any emotional changes to ripple the way that they have. I didn't expect any life changes after coming home. Wrong. A new baby is something to hold dear, to protect and cherish. Joel is something above and beyond that, and I feel special and loved because of it. Instead of our new baby affecting our lives, he's affecting everyone within earshot. A three-month stay in a hospital does a lot for a family with faith. My husband and I learned just how much effort it takes to stay insync with stress and miles between us. We tried harder, we loved more, and each minute together was spent communicating, even when we didn't want to. It was tough on us, but we're stronger today than we've ever been. Every minute we had with the kids was one that we were thankful for. We were given a chance to share with others what big faith was all about, even when we were unsure of tomorrow's outcome. Spiritually, our family grew together in ways we didn't even know were possible. I got the chance to meet & get to know some of God's best work, and I'm telling you right now, they all work at Mary Bridge. I love every single one of them. I made life-long friendships with people who are dealing with similar situations, and they lift us up and encourage us daily.

My family came up to our home for a weekend visit, and I'm coming to see the affect Joel has had on them as well. We hugged tighter than we used to. We stayed up later to talk and hang out. The cameras were out at all times. I don't think I was the only one to notice the change.

What a wonderful gift we've been given. My eyes are opening to a glimpse of our Father's love for us. He didn't just give us a new life. He gave us a child that is going to change the lives around him, and he's just getting started.

Overdue Update:

We have had a busy last two weeks, including lots of appointments at various places.

Cardiology: At Joel's last appt on the 7th, his EKG & echo looked amazing. Stefanelli said if it wasn't for his lung clots, he would pass him for his once-a-year check up. This is awesome.
Hematology: Dr. Irwin was pleased with Joel's progress. Full blood workup showed all normal levels, which allowed us to drop his diuril down by half & discontinue aldactone completely. His thyroid levels were normal also and we discontinued his synthroid. Genetic testing was done with the same bloodwork, so we will know if Joel needs to be on a blood thinner forever, or just before "body trauma," like surgeries or procedures. Hoping for the latter of the two.
Speech: What a huge milestone this week with Jennifer! Joel took his first bottle EVER, and did great. His wean & med changes were pretty extreme since then, (lots of vomiting & choking,) so he hasn't had one since, but we were given the ok to give him one 10ml bottle a day and work up from there. I'm ecstatic!
GI: Finally got our Doctors right. We were scheduled to be with Dr. Pickens. I met him for one appointment, and I don't care much for him. Thankful that we were able to get back with Mimi in Tacoma. Our main concern was his Reglan every 6 hours. It increases motility, and Joel's been crapping almost every diaper...(not sure what I'd do without cloth diapers!!! HOLY COW!) So we were able to get that decreased in half. This med is for his reflux, and so he's been throwing up more....after his wean is over-over, it should be better. His feeds were also increased, and in 3 weeks, we should be up to a point where he gets to be off for 3 hours/day instead of 24 hours of continuous feeds.
Pulmonology: We had an appointment with Ricker a week after we got home. His only goals for Joel are #1, to grow. #2, not to get admitted. I'm fine with both. :) It's not fun trying to wean a kid off a vent when they're going through withdrawals, and by August, we'll have grown a bunch.

At 4 months, Joel weighs 11lbs, 4 oz. Thanks for reading!

The Cord Prayer

The cord prayer. I got this idea from my friend Stacy. Her baby came home with lots of cords too. If you have more than one electronic cord behind your t.v., you understand how quickly it can turn into spaghetti....and if you know me, you know how much I hate my husband's THOUSANDS of electronic "spaghetti" in our livingroom...beneath the computer...spilling out of open boxes in the garage....

Her cord prayer was much more eloquent than mine,...and on a bad day (or week it seems,) I have to fight the urge to cuss during my prayer time. "God, please help me have some &%$#%# patience today with these (*&^%#*% cords, or I'm gonna !#@%#&# ^$@#! I say this already knowing the answer, but I hope God hears my heart when my prayers turn to gritting my teeth and spewing out garbage like this. It's frustrating. I have a kid with cords. They keep him alive, and I am thankful for them, but there are times when I fantasize about unplugging him and running as far away from his machines....to some place tropical. :)

Ummm, I'm an RT??!

I've never been so tired in my entire life. Stacy told me I would feel that when I went home, and until now, it hasn't really applied to me. In fact, I probably should have taken tylenol pm a few nights. But, yesterday, we ran into our first live "training exercise," and since then, I feel like a zombie. You were right Stacy, I need a nap!

So, yesterday afternoon while some friends were over visiting, my nurse yells at me to come into the family room...with urgency. I run in there, thinking she's dropped something, kinked a cord, something along those lines...and instead, I come in to find Joel....blue-faced up to his eyebrows. We suction. Nothing. Suction again. Nothing. I flip on the compressor. Stats stay below 90. She grabs a towel roll. I grab the extra trach, lube....I start loosening the trach ties, and we decided to quickly suction one more time to see if we can free up the airway. BAM. A ton of junk came out. Obstructed airway lesson #1. It took a good 20 minutes to get his color back to normal. He stayed a white-gray for quite a while.

I felt like a deer in headlights.....DID THAT JUST HAPPEN??! Although it scared the living crap out of me, I was a little excited. I did it. We did it. There was nothing to prepare me for that. You get the teaching. You read the books. You try to absorb what you can, but until a situation actually comes into play, you can't practice. You can't practice an adrenaline-high. It was exciting to know that in that situation, I didn't panic. I was completely clear headed. Focused. WOW. I'm still almost in disbelief.

I want to thank all of the staff at Mary Bridge PICU for helping me learn all of the necessities. I know I had a bazillion questions, and bugged you and bugged you for training and lingo and hands-on. I was so scared, and I'm sure there's going to be more times like these in our future. Everything you told me was fresh in my head. Thank you for preparing me as best as you could. I am so thankful for you!

Can you say Awkward?

Yesterday was Joel's first day of scheduled appointments. I was totally excited, because I remembered sitting in the PICU, and having people come in to visit the nurses with their discharged babies. It was neat to see them coming back. I knew that someday very soon it would be my turn. We made it out of the house with no major catastrophies, thought we packed everything.....we forgot diapers, and the carseat attachment for the stroller.....not too bad for our first appointment! Luckily the doctors offices carry diapers, they had sympathy for us and gave us a few for the road...haha.
I was completely unprepared for the stares we got. HOLY COW. Maybe I'm in la-la land here, or just way too comfortable with our new entourage, but I didn't realize how different we looked to the rest of the public. I've never been noticed so much in my entire life, and it made me super self-conscious! I'm not talking a few looks,.....I'm talking long stares, and people looking at me like, "Oh. I feel bad for you." Special-Needs Moms: Does this drive you nuts???? I mean, I know people were having the best of intentions here, but come on, I almost felt like a celebrity. I get it, but I don't. My kid is totally normal except for the extra cords. I guess I'm still in that "new-mom" stage, where I expect some looks at the new baby, and I get excited until I realize why they're looking. It's not just because he's cute....people are almost afraid to look at him or talk to me, and that's so stupid. He deserves all of the gawking that new infants deserve. He's perfect.
It's not that I hate sympathy. It's just that I don't really understand the thinking behind it. I would never think to a person with a trached kid, "I feel bad for you." The trach provides an airway for my child that has respiratory failure. I'm thinking that's a pretty awesome thing. Please do not feel sorry for our family. We are not sad or burdened. We are absolutely ecstatic. Our child is alive and well....he just comes with a few accessories. Don't be afraid to try and hold him when you come over, or tell me how beautiful he is, (and he is ;) and to the perfect strangers out there: if you're curious, feel free to ask me questions, he is something I'm thankful for and proud of. I would LOVE to share the miracles that have happened to this little boy. :)