Sunday, October 26, 2008

Home, Here We Come!

It's official: we're going home tomorrow! It would have been today, but I requested an evaluation from a speech therapist, and they're not here on weekends. So we'll have that tomorrow, and then we'll be discharged.

You'd think I'd have learned by now, but I'm still marveling at how God *always* exceeds my expectations. I mean, post-op day #5 and ready to go home?? Our Lord is mighty indeed!

We give thanks to God for Owen, for His healing touch, for our surgeon Dr. Abraham and his staff, for the nurses here at St. Vincent, and for our families, friends, and workplaces, all of whom have helped us weather this week. Please lift up a prayer of thanksgiving for these intentions on our behalf. We *really* want God to know how much we appreciate these blessings!

Friday, October 24, 2008

Say What?

This will be a short update; I'm waiting for Mark to get out of the shower so we can go turn in our key.

Today we will be moved to a regular pediatric floor. Owen now only has his EKG leads, saturation monitor, two IVs, and his surgical drain attached to him. He still is sounding pretty congested, but it's staying out of his lungs.

The big surprise of the day came out of the visit we had from our cardiac surgeon this morning. He busted out with, "I think we'll be ready for discharge Sunday or Monday, let's shoot for Monday." To which I replied, "As in THIS Monday?!" Apparently, yes. He's probably being a little overly ambitious; I imagine we'll really be discharged more like Wednesday. Still, it's great to hear he's doing so well. I overheard rounds this morning, and the NP presented Owen by saying, "Owen had the Glenn on the 21st and he's really done great since day 1." What awesome words! We are excited for Owen to continue to heal and to get home quickly. After all, he has his first Halloween to celebrate!

Wednesday, October 22, 2008

The Glenn Update #2

I'm so sorry I didn't get a chance to post last night! I tried several times, but the computer was always occupied (there's only one.)

Owen continues to do superbly! He was extubated yesterday afternoon with no problems. He is down to 1/2 liter on his oxygen, which is great! His lungs continue to sound clear. His pain seems to be generally well-controlled, though it's hard to tell. He hasn't been fed yet, and his arms are tied down out to his sides so he can't get at any of his tubes or wires and pull them out. So even if his pain is controlled, it's easy to imagine that he may be highly uncomfortable and angry! Even so, he's had several calm periods where he just lays there and looks at Mark or me. So we think we're moving in a good direction.

He already looks quite different to me. For the past couple of weeks I had been noticing that his legs looked somewhat purple and mottled. That is completely gone now. His skin looks flesh-toned and perfect! Although it appears he has inherited his mom's fair complexion, poor guy. We'll have to be careful about the sun!

We are spending the day here with Owen at St. Vincent. The plan is to get his Foley catheter out, *possibly* get his art line and cardiac line out, and feedings should start any minute. We're doing low-volume continuous feeds to begin with, to reduce the chances of him vomiting. We're taking it one step at a time, but so far Owen is exceeding expectations all around!

Tuesday, October 21, 2008

The Glenn Update #1

Well, today has gone much more quickly than I had imagined it would, and I haven't posted any updates yet! First thing's first: Owen is out of surgery and doing fine. We have not yet gotten to see him, but according to the surgeon everything went as expected and he remains stable. They are doing a chest X-ray now, and if that is clear then we will get to go back and see him. Should be within 45 minutes.

Now for the longer version of today: We brought Owen in to St. Vincent at 6am. He was grouchy this morning, but who wouldn't be after waking up at 5am?? He was such a trooper through having his blood pressure taken and saturations read. The nurses took him back to the OR at around 7:15. Surgery itself got underway at 9:10. We had an update at 10:30 that things were going smoothly, and then we had another at 11:45 saying they were wrapping up! Like I said, this morning went quickly. We grabbed some lunch and headed up to the PICU waiting room. Our surgeon has been in to talk to us and seems to think everything went well. We're just waiting to get back and see him. Mark's parents and sisters are here waiting with us. We are a little nervous, because as the OR nurse said, the next 24-48 hours will probably be a roller coaster. But mostly we remain calm and thankful for the enormous blessings that have been given to us: that Owen has been stable for so long, that he has come through surgery this morning so well, and that we have had six glorious months with him already. These gifts are ours through the grace of God. Thank you so much for all of your prayers. I will update again once we have seen Owen. That is, if I can tear myself away from his side long enough! =)

Thursday, October 16, 2008

Prayers Needed

Please say prayers for the Simmons family. They also have an Owen with HLHS. He is just a few months older than our Owen. He's had the Norwood and the Glenn, and lately has been having some not-so-great heart function. He had a catheterization yesterday which showed he needs a heart transplant. It may be soon, or may not happen for months to years, but at some point he's going to need one.

This is our biggest fear. Our Owen will not be eligible for a transplant because of his chromosome abnormality. Transplants are rarely made available for individuals with chromosome abnormalities or mental disabilities. This is because the drug and care regimen required post-transplant is so stringent and difficult to manage. We told our heart surgeon from day 1 that we don't want a transplant, and he agreed with us. We have been super blessed over the past few months that Owen's heart function has remained so good. Of course, with the Glenn coming on Tuesday, the future still looms uncertain. Do heart parents EVER get to stop worrying?

Tuesday, October 14, 2008

A Day in the Life

It's not often that I get the opportunity to be on my own with Owen for a whole day. Owen's daycare was closed today, so I switched shifts to be home with him. I have to say it has been both fun and frustrating! So I'm going to share with you all what my day has been like. Warning: talk of bodily functions in this post!

Mark of course still had to go to work today. So our alarm went off at 5:10 as usual. I think there should be a federal law that 5:10am does not exist. Oh well, this is what time you get up when you both have to be at work by 7. So Mark got up and I lounged in bed for a little while. I heard Owen making noise over the monitor and went to check on him. He was lying in his crib, 180 degrees from where we laid him last night, and cramming a toy in his mouth. The second he saw me he got a huge grin on his face. I changed his diaper and took him back into our bedroom. Mark said goodbye to the three of us, and then I put Owen back down in his crib. I got his bottle ready, along with his AM meds, and fed him through his tube. He went back to sleep. And so did I.

A couple of hours later, I heard him making noise again. He was kicking in his crib. When Owen kicks, he lifts both legs up so they're 90 degrees from his mattress (or the floor, or whatever) and then slams them down at the same time. He was pretty stinky, so this time I changed a dirty diaper. I put him back down to play while I showered. He cried the whole time. As soon as I got out and picked him up, he was quiet and snuggly. Then he got a bath. Usually he does not tolerate his bath very well, but today it wasn't bad. After his bath we played on the big bed and read a book. It's a cloth book, and Owen loved it! He tried to eat it. I took him downstairs and put him in the swing while I had breakfast. He did okay for about 10 minutes. Then he got mad because he couldn't reach the animals hanging from the mobile. He's a pretty grabby kid.

We had to go grocery shopping today. I don't like to take Owen to the grocery store (or really any store for that matter; we like to minimize his exposure.) But today it had to be done. He was very well behaved (after pooping again right before we left,) and just played with his toys in his car seat. He likes it when I kiss the bottoms of his feet, so I did that several times while pushing the cart. He smiled up a storm.

Once we got in the car he got super fussy. It was about time for him to eat, so I thought that was why. But as soon as we got home and I laid him down, he was asleep. It literally was that fast. He HATES being in his car seat, so I guess he was just refusing to sleep until he was comfy? Anyway, I gave him his bottle while he napped. Then he woke up and things got pretty messy. He started trying to poop, but he still had lots of food in his tummy, so he spit up quite a bit. This was projectile, but not too bad. Only about 15 inches away from his body. So then we changed another dirty diaper, and he went back to sleep.

He just woke up again not too long ago, and he played with his toys on the floor for quite a while. I got out his play gym, which has been put away for a week or so, and he's going to town with that thing. We have chimes on it, and a blow-up ball for him to kick, and he's just grabbing and kicking away. I think he just pooped a little more too. I'll have to go check.

For as little as we've done today, it sure has seemed busy! While I wish I could have more time with him, I can't imagine staying home with him every day. I would go stir crazy and be a pretty unhappy mama! There has to be a happy medium somewhere.

Monday, October 13, 2008


Warning: sensitive subject ahead...

I usually try to stay out of political or personal choice debates. I feel like nobody wins, and people just wind up getting angry. But this is something I want to share.

When I was in college, I was staunchly pro-choice. I was one of those "I'd-never-do-it-but-I-support-other-womens'-rights-to" kind of people. Then something changed. I had always had the idea that abortion was rare. I have no idea why, maybe because I wanted it to be? But here's the truth:

There are roughly 4 million births in the US every year.
There are slightly over 1 million abortions in the US every year.

Do the math. That's TWENTY percent! A full fifth missing from the generation being born. This completely changed my views on abortion. Yes, I still am one of those women who would like termination to be available in certain circumstances, mainly when carrying the baby threatens the life of the mother. Don't ask me about pregnancies resulting from rape, or those with a poor prenatal diagnosis. Those situations are so intensely heartbreaking I wouldn't know where to begin. And this from someone who's been there.

You know how many Down syndrome pregnancies are terminated? A recent study found 92%!! Disability advocates are worried that people with Down syndrome will become completely shunned by society, research, and insurance companies. Some ethicists are calling this modern-day eugenics.

This is why national healthcare scares me. You think we have it bad with the insurance companies telling us what they will and won't cover? At least we have the courts to fall back on and appeal. What would it be like if the government or government-appointed administrators decided what conditions got treatment? The truth is there are only so many healthcare dollars to go around. Decisions have to be made. National healthcare does not mean everyone gets treatment for every condition. Certain European countries with national healthcare have a cutoff for premature babies. If they are younger than 25 weeks, they are not saved. Period. Owen has cost over 300,000 dollars so far. And he still has 2 more open heart surgeries ahead. I'm sure the cost of his care will approach half a million dollars by his 5th birthday. It's easy to imagine a world in which the administrators of a national healthcare system would look at that amount of money and decide it would be better spent elsewhere. Especially because Owen also has a chromosome abnormality and likely has mental disabilities that will require him to have care and supervision his whole life. They would see him as never being a "productive" member of society.

Anyone ever read the book "The Giver?" That's where I'm scared we're heading.

Learning these numbers and facts changed me. I just needed to share.

As an aside, this is another point of contention for me. It really bothers me that the pro-choice movement has started referring to the pro-life movement as anti-choice. Believe me, I am pro-life and all for choice. People can certainly make the choice not to have irresponsible sex, and put oneself in a position where one needs an abortion. Or the choice to give a child up for adoption. Why does "choice" *have* to include abortion?

Wednesday, October 8, 2008

Six Months Old!

Okay, so Owen actually turned 6 months a week ago. But now I actually have some pictures to post! I have a sneaking suspicion we won't actually get around to taking him to have his picture taken, so I dressed him up and took some today. He was really good for it! Here are a few.

We also got the results of my bloodwork. Based on my age alone, the chance of us having a baby with Down syndrome is about 1 in 700. The screening has decreased that chance to about 1 in 14,000. And based on my age alone, the chance of us having a baby with Trisomy 13 or 18 is about 1 in 1100. The screening has decreased that chance to about 1 in 22,000. So we had good news. =) I'm still a little nervous because as I mentioned before, this screening likely would not have caught what Owen has. But for the moment, we can just relax and be happy that the baby probably does not have any of these other conditions.

Sunday, October 5, 2008

Good news

I just wanted to let everyone know that last Wednesday went well. The first trimester screening process includes two ultrasound measurements and one finger stick blood test. The ultrasound measurements were normal. We should have the results of the blood test this week.

This screening mainly detects Down Syndrome, Trisomy 18, and Trisomy 13. We did not have this test done with Owen, and there is a strong chance it would not have picked up on his condition anyway. So this doesn't mean the baby is completely healthy, but it does rule some things out.

We scheduled our main ultrasound for December 3rd. It seems like forever to wait. Our plan is to see what that ultrasound shows and go from there. If abnormalities are detected, we will decide whether to have amniocentesis (this is what happened with Owen.) If everything looks normal and healthy, we will try to relax. And still might have amniocentesis. =)

Regardless, there will be a fetal ECHO just after Christmas. So right now it's just a matter of staying healthy and waiting.