Thought I'd add some new pics of the little dude. Joel's doing lots of new cute things...(of course, he's a baby :) We picked him up a little teddybear attached to a blanket, and I think he made a friend for life. Everytime we give it to him he gets so excited!

And this is how we find him. He hasn't exactly rolled over in one fluid motion yet, but he's trying SO hard! I had just laid him on his back, walked to the kitchen, came back, and this is where he was. He does this over and over and over. And quickly! This kid LOVES laying on his tummy. Sleeping pictures are so precious anyway. He hasn't had much of a chance to rollover, so we're doing tummy time....which is super awkward by the way...but he seems to like it ok. This is Suzi, Joel's Occupational Therapist. She's very sweet, and Joel's still getting to know her. I love this picture....his poor butt had the worst rash!

As of yesterday, sprints are up to 30 minutes, three times a day. After being sick for a few days, he wanted to be distracted from sprints, because he wanted to depend on the vent to breathe for him. (Much like Connor did after being sick...trying to get him back to his own bed after healing from the flu was a nightmare!) Last night, we went for walks around the house, sat on the front porch and watched the neighbors make their loops around the block. I love moments like those. Just snuggling with my baby in a blankie....for a second, I forget all that we've been through and it feels normal. It was a peaceful I couldn't create if I wanted to. I am so thankful.

Stuff's gettin better

Our family dynamics have changed again...in a wonderful way. Three times a day we get to turn the ventilator off. We unplug Joel from his feeding. We take the oximeter probe off. And we walk around. We sit wherever we want, and we don't have to worry about rearranging cords. Three times a day. The other morning, Joel got to snuggle with me on the front porch couch, which meant a lot to me, because I usually sit out there alone or with Adam, and from the couch, I have a perfect view of Joel's bed. It was neat to have him on my side of the window. It's a new freedom, and it's a nice break from the beeps, and the spaghetti. Things are looking up once again. Soon it won't be minutes, it will be hours that I'll get with him off of the machines. Wrapping him up close to me, like babies are supposed to be.

Crazy Week

Thankful it's Monday. Last week was definitely a test of sanity, among other things...

We're learning how to balance a healthy marriage & parenting on little sleep. We had two nights this week with no night coverage, so we pulled graveyard a couple times. If I didn't have a life pulling me in five hundred directions during the day, it could totally grow on me. I can accomplish during the wee hours of the night things that I notice all day long and never seem to get finished...taking out the recycling pile on my kitchen counter, laundry, art projects, drinking a cup of coffee before it gets cold. Brings back memories of staying up all night painting. Theoretically, it would work. Realistically, I was mentally insane by Sunday. No sleep, general hectic-ness, and Mia smearing poop all over upstairs TWICE in one week, (and that's with taping her diaper on....) I think that pretty much sums it up....and then there's Friday.

Adam had to drop off Logan/pick up Connor in Eugene Friday. We had to go to Tacoma. Since he was driving farther, it made sense that he take the Kia and I take the gas-guzzling suburban. The appointments went great. Joel had an EEG & a venous (2 HOUR) ultrasound. We haven't got the results of the ultrasound yet, but the EEG showed normal brain function, and we were given the go-ahead to start the phenobarbital wean. YAY! We stopped by the PICU, saw some friends, had a great time. We ended up getting out of Tacoma at 5:30. On a Friday. In a car with no a/c or working cigarette lighter adapters. Test faith much? When we finally reached Lakewood, our suction machine was fully out of power, and we got a call from a friend alerting us to a 12 car accident on I-5. We pulled off for gas and decided maybe we should just stop off for dinner as well...we were unsure of how long we'd be stuck in traffic, and we only had about 4 or 5 hours left on the vent battery. Red Robin it was. We were able to save a booth next to the hostess stand and get Joel plugged in before the dinner rush arrived. I was pretty nervous getting him into the restaurant, but once we got settled in and I got my iced tea, it was smooth sailing. Joel's first time to Red Robin was a success! I'm so glad we were forced to act in a situation like this, because now I think I could take him to a restaurant again with ease. We did it!

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!