Owen's Special Day

Sunday was Owen's conditional baptism. He was very sweet the whole day, and it was so nice that so many people who love him could be there. We definitely missed those of you who couldn't make it. Here are a few pictures from the baptism, and a couple others too. I'll post more soon!

Hard Times

When you're the mother of a "heart baby," you tend to seek out others with similar experiences. It helps to know you're not alone. Although I love reading their stories and cheering their victories, I have often felt alienated from other heart moms. Most other heart babies do not have chromosome abnormalities too, but in the course of learning about other heart children, I have found two who have chromosome abnormalities as well as HLHS. I have followed the stories of these two heart babies with whom I have felt an extra special bond for several months.

Baby Eden was born in February with HLHS and Down Syndrome. The pictures of her on her family's blog are absolutely gorgeous. Her family has been such an inspiration to me. Baby Eden has two big sisters. In the midst of Eden being in the hospital, her parents decided to take their two older daughters on a break. They arranged for other family members to stay with Eden, and took a short trip with their other daughters. They showed me how important it is to balance the needs of the entire family. Feeling a part of Eden and her family's journey has been so special to me. Eden went to Heaven on July 5th.

Baby Nolan was born just a few weeks after Owen, with HLHS and a rare chromosome abnormality. His pictures on his carepage show such a strong personality! I received several messages of support from one of his family members - she is wonderful. Nolan went through the second stage surgery early, at three months of age. He had a dangerous arrhythmia that caused him to need the Glenn early. His arrhythmia continued after the surgery, but he was able to come home with his mommy and daddy. This family has had SO MUCH prayer and support. Nolan went to Heaven on August 21st.

I felt as though both of these families really understood our situation. Not only do we face the unknown of Owen's heart health and lifespan, but we also face the unknown extent of his disabilities. The weight of this uncertainty can be crushing, and it meant so much to me not to feel alone. I admit, now it feels a little like Owen is "next." We choose not to live our lives with this knowledge tainting our thoughts every day. But the truth is, Owen's situation could change at any time, and we probably will not get to have him with us as long as we want. We find peace in our determination to give Owen the best life that we can, and in our knowledge that God has been taking such good care of all of us. And it's hard to be scared or sad when you're looking at his sweet little face. Please pray for the comfort of these families and others who have lost their precious little ones.

Oh boy...

Well. I guess things weren't hectic enough, because the week after next has suddenly become a lot more complicated. Why? Our house actually sold! So we are currently looking at this schedule:

Aug. 27th: Owen's heart cath, Mark's off but I work that night
Aug. 28th: 8:30am close on current house, 10am close on new house, sometime that day Owen will get discharged, Mark's off but I work that night
Aug. 29th: get everything out of the current house, probably in some kind of kamikaze blitz whirlwind, Mark's working in the morning but I'm going to try to be off so I can keep Owen with me and give him another day to recover before going back to daycare
Aug. 30th: the new owners take possession of our current house, we move stuff from storage and actually try to arrange furniture in new house

The ONLY downside to my new job is I obviously don't have any PTO yet, and I have to be there 6 months before I can use it anyway. They are great there, and I know they will work with me to get me any unpaid leave I need to take for Owen. What we're trying to do is tag team when we're working that week, so we can save time off if a true emergency ever arises with Owen. I know it looks stressful (and it probably will be) but I'm actually looking forward to the challenge. I must be nuts. =)

Owen drank three whole bottles on his own today. I broke away from the schedule a little bit and let him eat when he wanted, and he did pretty well. Tomorrow Owen's G-tube gets switched out; hopefully it will be quick and painless for both of us!

Growing up!

I walked in to Owen's room this morning to check on him, and this is what I saw. He looks so grown up to me here! He was resting so peacefully. The "field goal" positioning of his arms is something he does all the time when he's on his back. But that's rare; he's usually curled up on his side.

Owen sees the pediatrician tomorrow and the GI surgeon to follow up on his G-tube Thursday. His G-tube is going to get changed out for the first time at that appointment, and they're going to show me how to do it. I don't know why, but something about the G-tube just creeps me out. I was able to look at Owen while his chest was still open without batting an eye, but dealing with the G-tube sometimes makes me gag. I hope we're able to get rid of it soon after the Glenn, but I'm not holding my breath. Owen is eating well enough for us to be happy, but he's still only doing about 60%.

I'm starting to do a little light packing for the move. The trouble is, our storage area is pretty much full, so any boxes I pack have nowhere to go. And we're still having showings of our current house in the meantime, so we have to keep boxes to a minimum. We close on our current house Aug. 27th, and we'll have "a few days" to move out after that, according to our realtor. Since we close on the new house the next day, I think it'll work out great. It'll just make for a busy few days!

Yay!

I'm so happy to hear that several of you are going to try to come to Owen's baptism. We're thrilled to share it with you!

And FINALLY, about the "big news" I mentioned a couple of weeks ago... I have a job! Now some of you may be thinking, "But didn't you already have a job? And wasn't it the exact one you wanted? And weren't you super excited about it?"

Well, yes, yes... and yes.


So what happened? Owen came home. I accepted the first job before Owen was born, having no idea what was going to happen with him once he arrived. When he got home, I started realizing things like, "Um, I'm going to be working far away, with a 1.5 hour round-trip every day... And so is Mark, only on the exact opposite side of Indianapolis." At the same time, I had a rotation at a hospital that was less than 10 minutes from our new house, and it was a place I loved. AND they had a position open when I left. So I bit the bullet and went for it. And thankfully, I got it!!! So I'm sure it's obvious we're all very happy with this arrangement.

Owen's still chugging along development-wise. He is still super close to rolling over. It still frustrates him that he can't yet. His head control gets better by the day. He loved watching the opening ceremonies of the Olympics last Friday night. Probably not the best stimulation for my baby, but he was enthralled with all the lights so we let him watch. For the first time this morning, I walked into his room and he had done a 180 in his crib. He also turned on his crib aquarium on his own (I think with his foot.) I happened to be awake, and heard it suddenly come on over the baby monitor. We've also heard him cooing at his toys over it. I think he may also be trending slightly better in the feeding department. He still hates baby food (sweet potatoes have now joined peas on his hit list) but he's doing pretty great with his bottle.

We close on our new house August 28th, so we really need to get moving on packing! We went by yesterday and it looks like a house! It needs a good cleaning, but there are just a couple of finishing touches that aren't done yet. So it looks like there should be no delays, and we'll be able to move over Labor Day weekend. Yay!

Baptism

We had Owen baptized on the day he was born. There was so much uncertainty surrounding what was coming for him, we felt it was the best thing. Two priests from our home church came to perform the baptism. We got it on video, but sadly we didn't get to have our family there since he was in the NICU.

Well, now we get to celebrate Owen's baptism with everyone! This will be a conditional baptism, since the actual rite has already been performed (you don't get baptized twice!) It will be Sunday, Aug. 24th at the 10:30am Mass at St. Alphonsus in Zionsville. St. Al's has moved away from performing infant baptisms during Mass, but we got special permission for Owen's to be done at Mass. So many of our church family have been praying for Owen; we thought it was fitting that they get to be a part of the celebration of God's work in Owen. We can't wait to share this with everyone at church who has been supporting us and Owen through prayer and encouragement. You mean so much to us!

Mr. Personality

Just thought I'd share some about our little guy's personality!

1) If you wake him up out of a deep sleep, he flails around and growls at you, just like his daddy. But once he's fully awake, he's all smiles, just like his mommy.

2) He is definitely in control when he eats. Now that we have started letting him taste solid foods, I always show him the bottle or the spoon before putting either to his lips, so he can start telling the difference. About half the time he takes an active role by grabbing either and pulling it to his mouth. Other times he holds the bottle as I give it to him. And other times, if he doesn't want it, he bats it away and glares at me. I just tell him I have more attitude than he does, and it's going in one way or the other!

3) He has ZERO tolerance for a dirty diaper, and lets you know it.

4) He loves to lie on his side. Lately he has started grabbing things (his sheet, toy gym, etc) and pulling while he lies there. He's going to pull himself onto his tummy any day.

5) He is happiest when he has something soft in his hands that he can grab, like his lambie or a cloth diaper.

7) He has started exploring things by bringing them up to his mouth.

8) He doesn't like peas (yet.) This works to my advantage because, given the option between peas and the bottle, he'll take the bottle. Sometimes if he won't take the bottle, I'll give him some solid food so then he'll pick the lesser of two evils and eat!

9) He has started paying attention to the TV, or at least the lights and sound of it. Sometimes we have to turn it off so he'll focus on eating or playing instead.

10) He is SUPER interested in his surroundings, especially in other people. If he senses movement or noise, he'll crane his neck to see what's going on. If it's more interesting than you are (and pretty much everything else has started being more interesting than mommy and daddy,) forget trying to get his attention back. Looks like someone takes after his Aunt Beth that way!

We have a date

*Gulp* The Glenn is coming.

Owen is scheduled to have the Glenn October 21st. As long as he remains stable in the meantime, that is. It never was going to be easy to hand him back over for another heart surgery. However, it's nice that we can prepare ourselves mentally well beforehand.

Everything else is pretty boring right now. We've gotten to spend some fun time with family over the past couple of days. We were given a closing date of August 28th for the new house, but since Owen's cath is the day before, we'll probably try to push it back a couple of days. That's about it. We hope you all are having a great weekend!