Tuesday, December 16, 2008

Teething, Eating, Gaining, and a New Baby _____

So our little guy finally actually has a tooth coming through. He was super fussy all evening on Sunday, and when I looked in his mouth I saw the little bump on his bottom gum! He's been pretty comfortable since then with Tylenol. It's pretty cute though; he keeps running his tongue over the spot like, "Hey, what's this?"

And... Owen is EATING! Not a ton, and nowhere near enough calories to get rid of the G-tube, but he eats! He's been eating the Gerber Graduates puffs, and doing a little bit better with baby food lately. It's also fairly common for him to take about 4 ounces of formula for us at a time. So, frustrating as it is that we still have the tube, I really do think we'll be without it someday.

It's actually a good thing we still have the tube, because Owen has been upped to 36 ounces a day. Which doesn't sound like a lot, until you think about how many calories that is. His formula is mixed at 30 calories per ounce, so that's over 1000 calories per day! Formula mixed the normal way (and breast milk) is about 20 calories per ounce. All this may actually be having an effect, because when I weighed him this morning he was closing in on 15 pounds! It would be great if that's real, but I'm slightly concerned that he may be retaining fluid. After all, last week he only weighed 14 pounds. So I'll be keeping an eye on his weight to see if this is just a random jump (he tends to have those) or if it's something to be concerned about.

So our little guy has definitely been reaching some milestones and doing better all the time. And soon we'll have to be more specific than saying "our little guy." That's right - Owen's having a baby brother! I'm at 22 weeks and feeling good. We're thinking about names but haven't settled on anything for sure yet (and we probably won't until Bean's born.) He's been pretty active lately - it's both exciting and nauseating to feel him moving around in there!

We're getting ready for our first Christmas in our new house. Owen loves the lights, of course, and is enthralled by the train we have around the Christmas tree. A few days ago he "helped" Mark look at the ads in the paper. Okay, so he mainly grabbed the papers and waved them around a lot. So I think he'll have fun with the wrapping paper. Speaking of which, I need to get to it! I wish presents wrapped themselves sometimes. =)

Wednesday, December 3, 2008

A Healthy Baby...

Is exactly what it appears we're having! Our ultrasound today showed all of the appropriate parts, formed the appropriate ways, and in the appropriate places. It also showed one particular part that tells us the gender of the baby. Yes, we're going to tell. No, not today! We're waiting until we have a chance to tell our families before announcing it here.

Our experiences with having children have obviously been anything but typical. The doctor looking over the ultrasound (the same one that delivered Owen) said, "Well, I can't find anything wrong with this kid." It was music to our ears, but I'm sure it's not exactly the phrase uttered by most OB/GYNs upon analyzing ultrasound images! During our first ultrasound with Owen, I was excited during it, and terrified after. This time I was terrified during it, and excited after. Given this good result, we are not having amniocentesis performed this time. We will simply wait and have the new baby's chromosomes analyzed once he/she is born.

Meanwhile... Baby Owen has an ear infection. =( He had a fever on Monday, and his temp came down out of fever range but has remained high since. He's been cranky and wanting to be held constantly. I talked to his pediatrician's office Monday, and they weren't concerned. We saw the cardiologist this morning; he looked in Owen's ears and declared the left one fine, but the right one he couldn't see in because of too much wax. He wasn't concerned either. However, once I got to my regular OB's office (yes, we had 3 doctor appts scheduled today,) he had developed a discharge from his right ear. I took him over to an urgent visit center and sure enough, the pediatrician thought Owen's eardrum had ruptured. Hence the discharge, fever, and irritability. Poor bubby. So now we have two antibiotics to give him. Hopefully he'll be out of the miserable stage soon! It's heartbreaking to see him so sad and in pain.

On the plus side, though, our cardiology appointment went great! The cardiologist says Owen's doing very well. We get to discontinue one of his meds altogether, and go down to once a day on another one. So we're back to the schedule we had before this surgery. Also, Owen officially gained 12 ounces in less than a month! This is huge for him, and the cardiologist was really happy with that. So hopefully we can continue these positive trends, and get Owen feeling better soon! We want our bubby to be able to enjoy all the fun Christmas events!

Sunday, November 30, 2008

Let it Snow!

We woke up this morning to a beautiful blanket of snow on the ground, and more on the way! It's still coming down fairly heavily; we expect 2 inches total by tomorrow. Not very much, but enough to start getting in the spirit of Christmas. It just isn't Christmas to me without snow!

Our little man is currently lying on the floor, drifting off to sleep. We spent the day with family yesterday, and he only had about 4 30-minute naps between 8am and 10pm; there was just too much going on! So he's been catching up on his sleep.

I think his weight is trending a little better. The day of his surgery, he was weighed at 13 pounds even, and two weeks later at his cardiology appointment, he still weighed 13 pounds even. At that point, our scale said he was 13 pounds 7 ounces. Now it says 14 pounds, so hopefully that means he's gained at least half a pound. We'll see on Wednesday.

Speaking of Wednesday, we have lots going on then. Owen is up first with a cardiology appointment in the morning. Then he and I trek off to my regular OB/GYN for a monthly checkup. And later that afternoon, Mark will meet up with us for an appointment with the perinatologist. This is the big appointment: our ultrasound to get a good look at whether Bean is healthy. I know there are no guarantees, even if all the "parts" are there. So we may still opt to have amniocentesis, or we may decide to wait until the baby is born and have a blood test drawn then. I don't think we will ever have another child without having its chromosomes tested. There are quite a few families in the trisomy 10q group who didn't have diagnoses for their children until they were a year or older, simply because those children were physically healthy. It wasn't until they started falling behind on developmental milestones that they noticed a problem. The luxury of having a prenatal diagnosis for Owen is that we knew he would fall behind, and we can take steps now to help him progress and keep him from developing bad habits in the meantime.

Developmentally, we're about to reach a huge milestone. That's right - no more sternal precautions as of tomorrow!!! We are VERY excited about this. Owen has become more and more steady holding up his head, and he wants SO badly to sit up and roll over. However, we haven't been able to let him do anything that would put pressure on his chest. So he hasn't been on his tummy in several weeks, and we can't hold him with our hands supporting his chest. It really has set him back, because he can't develop the muscles he needs to sit properly without being on his tummy and rolling over. Hopefully we will make some good progress over the next few weeks.

We set up our Christmas tree on Friday, and Owen adores it! Of course, he loves anything that lights up. Santa has Owen's Christmas all set, and Mark and I are interested to see what Owen thinks of Christmas overall. It was difficult to keep Santa from going overboard, because there are just so many toys that look like fun for Owen, but I think we did a good job.

I'll definitely update again on Wednesday to let you all know about Bean. But don't be surprised if you don't hear the gender of the baby just yet; we probably won't tell our family until Saturday, so look for news next weekend!

Friday, November 21, 2008

We're Back...

...from our blog hiatus! We've been busy adjusting to life at home after surgery, which has been great. Owen's first follow-up with cardiology after surgery went very well, and his next one will be December 3rd. At that one, we expect to be able to drop one or two of his meds. That's also the day of our big U/S to take a good look at Baby Bean. We are praying that Bean is healthy; I already want them to look at the heart first! We are also looking forward to finding out whether Bean is a boy or a girl.Owen has been a little more cranky lately. We think he's cutting teeth, although we can't see anything coming in yet. He is *terrified* of doctors/nurses; he screamed through his entire cardiology appointment and tried to hide behind my shirt. We've been working more on feeding, but we're not getting too far. So far, he hates sweet potatoes, carrots, green beans, pears, peaches, and applesauce. The two foods we've found that he will willingly put in his mouth and gnaw on? Tootsie rolls and Oreos. Fabulous. He hasn't gained anything at all since before his surgery, even though we're feeding him more than before. He gets about 130 kcal/kg/day, which should be plenty for him to gain well, but he just isn't. There's only so much you can concentrate his formula, and so much you can put in his tummy in a day. I don't know what we're going to do next. His length and head circumference are still following the curve, but his weight has dropped off dramatically.

I'm including some pictures from his surgery and after; he's really looking older lately!


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

Shocking

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.

Sunday, September 28, 2008

Leaps and Bounds

Our sweet little boy continues to amaze us. I posted some pictures from a few weeks ago, where he is sitting in a Bumbo seat. He used to slump over to the right all the time because he wasn't strong enough to hold himself up. But now he does! He'll actually sit up in his seat and play with a toy. After a few minutes he starts to get tired and lean to one side, but he's made so much progress.

He also appears to be tolerating tummy time much better. The other day I helped him roll over, then laid on my tummy next to him. He just looked over at me and smiled before he got to work. His favorite thing to do on his tummy is draw his knees up underneath him, and then try to pick up his head. Gravity is not on his side in that position, but recently he was able to pick up his head that way. If we pull his legs out and get his hips flat on the ground, he can lift his head and keep it up for quite a while now. It's a little disheartening that he'll have surgery in a few weeks and not be able to be on his tummy for a while after that, so we'll probably lose some of this progress. But it's such an encouraging sign that he's made it this far. He'll get back here again.

His absolute favorite thing lately is to "be big." What do I mean by this? He loves to be upright! I pick him up to cradle him in my arms, and immediately he's doing a crunch, trying to sit up. He now likes to be held up at our shoulders, but he still prefers for us to sit him up in our arms so he can see us and the world. We've started propping up his Boppy pillow so he can sit almost upright in it. You should see the smiles we get when we put him there and tell him he's a big boy! He's obviously proud of himself and happy to be part of the upright world.

His weight gain has also taken a sudden leap. When I weighed him earlier this week he was closing in on 13 pounds already! He's developed little fat rolls on his thighs. He is now firmly in the 3-6 month clothing range, just in time for him to turn 6 months next week. On Thursday I was home with him for the day, and I took the opportunity to organize his clothes. It was so fun to get out all of the new outfits he'll soon fit into, but it was sad to pack away the ones he's grown out of. He'll never be my tiny newborn again. And that makes me doubly sad because I feel like I missed it when it was happening. I know I'm still grieving that loss, and maybe I always will. I hope his continued good health will help me heal.

His health does continue to seem good. He had some increased stuffiness for a while, but that seems to have dissipated. His 6 month checkup is this week, so we'll see what the pediatrician has to say. This is the doctor's office that consistently measures him big. It'll be interesting to see what they come up with this time.

Owen still isn't eating well from the bottle. He pretty consistently will take at least some, but only if he's truly hungry. If only we all could eat only when we're hungry! Maybe he has the right idea! We're starting in with rice cereal again, and Mark actually had a little bit of success today. We'll probably just have to offer it consistently so Owen will know it's a part of the routine. He doesn't seem to be averse to the food, but he does seem to be scared of the spoon. We plan to let him play with it and hopefully he'll get used to the way it feels in his mouth. We don't know how long he'll need the G-tube, but I plan to really start pushing the feeding issue after he's recovered from his next surgery. I imagine he'll have it at least through the winter, so that we can continue feeding him even if he gets sick or starts teething and won't eat. It's so important for him to get those calories.

And sadly, October 21st is rapidly approaching. I'm excited for him to get through this next stage, because it's one more step down and he should be stronger afterward. However, we are also terrified. It was difficult to hand him over for the first surgery, but we didn't know what it was like not to have him in the hospital yet, and we were still exhausted from him being born five days before. It was actually harder to hand him over for the recent catheterization, even though that was a far less serious procedure. He is now such a part of our everyday lives. Not having him here at the house is going to seem so wrong, whereas the first time around we didn't know yet what it was like to have a baby at home. We knew it wasn't normal that he was still in the hospital, but it was OUR normal.

Please pray for peace for us in the coming weeks as we prepare for Owen's next surgery. I can't speak for Mark, but I can feel myself becoming more tense as the time approaches. I have two doctor appointments this week; one of them is my first trimester screening appointment. Hopefully I will be able to post again soon with good news!

Monday, September 22, 2008

Rolling over!

It's official - Owen rolls over now! His daycare provider had been telling us that he did it a couple of times last week, but he hadn't done it around us yet - until yesterday, that is. I had put him down to play on the floor, and I was resting on the couch. I heard him start fussing a little, but it was the kind of fussing he does when he's trying to get to sleep, so I didn't think anything of it. Mark walked in and asked me if I had put him on his tummy. I shot up and sure enough, he was completely on his belly! He wasn't even that upset about it!

Speaking of trying to get to sleep, our great sleeper suddenly isn't sleeping so great anymore. I think it's just that he's getting older, but now he totally fights sleep. On Friday he napped for 2 half-hour sessions in the afternoon (around noon and 2,) and that was it till about 10:30 that night! He still sleeps through the night fairly well, but he's taking much fewer and shorter naps during the day. I didn't realize how difficult it'll be to keep up with him when he's mobile and awake for long periods of time. And that'll be with a brand-new baby at home too!

Monday, September 15, 2008

Baby Bean

Yes, it's true! Baby Frossard #2 is officially on the way. Mark and I talked about having another baby, and I think I got pregnant the next day. Literally. It was a surprise but not a shock. We are thrilled! And nervous.

I will be having first trimester screening done to look for markers of genetic abnormalities. This will be on October 1st, so we would really appreciate prayers that day. We love Owen and wouldn't change his personality for anything, but we would really love to have a healthy baby this time.

Owen did some new things for us this weekend. Mark rolled him onto his tummy, and he rolled himself back over on his back. He also lay on his tummy and picked his head and chest up a couple of times. We hadn't seen him do these things before, and it was really fun. Owen seemed pretty proud of himself for awhile, but then he got fed up with being messed-with and let us know it!

Here are a couple of pictures of Owen at daycare. We couldn't ask for a better experience, and it has done so much to ease my mind about someone else caring for him. God has blessed us and continues to take care of us all! So check out these pictures... Does Owen have a little girlfriend?? Are they playing footsie??!

Wednesday, September 10, 2008

Surprise...

Coming April 19th, 2009!


Tuesday, September 2, 2008

More Pictures!

Here are some more pictures from Owen's baptism. My friend Julie came from Cincinnati for the occasion, and she took these for us. I can't believe how precious and BIG he looks! I want to point out the shoes Owen is wearing. They have little crosses on them, and some lace trim around the top. That trim came from my wedding dress; my mom attached it to the shoes. It was so special to have that little touch for his special day! I'm also including a picture from the day he was born so you can see how much he's grown!

We have officially moved into our new house. It's perfect for us and we love it! We had lots of help and we're very grateful, especially with Owen's cath last week, and moving right after that.

Speaking of his cath, everything looks perfect! The things done during his first surgery are holding up beautifully, and his pulmonary pressures are normal. This is SUCH a blessing! It means that, barring some emergency in the meantime, surgery will go on as planned October 21st. Although I think it was pretty obvious to us even before the cath that things were going well for him. He barely looks blue at all, for one thing. The other is that he can cry and scream like a champ. We had been told to expect him to have a low energy reserve, and that he would tire out quickly when upset. Well, that hasn't been the case in our experience! He can carry on for a good half hour before he calms down and drifts off (this only happens in the car where we can't hold him.) That seems pretty normal to me!

He's still not gaining weight much at all. I need to weigh him to be sure, but I think he still doesn't weigh 12 lbs, and he's 5 months old today. My goal is to get him as close to 20 lbs as possible by his 1st birthday. That's a normal weight for a 1-year-old.

We're all settling into our new house and still have lots of unpacking to do. It's going to be a time of adjustment (still!) but we're very happy and grateful for Owen's relative good health!

Tuesday, August 26, 2008

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!







Saturday, August 23, 2008

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.

Wednesday, August 13, 2008

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!

Tuesday, August 12, 2008

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!

Sunday, August 10, 2008

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!

Thursday, August 7, 2008

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!

Tuesday, August 5, 2008

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!

Saturday, August 2, 2008

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!

Thursday, July 31, 2008

Welcome!

Hello, and welcome to our new site for updates on Baby Owen! I decided to switch to Blogspot so our family and friends would have slightly easier access (eg no sign in required.) Not sure if I can archive the updates from our CarePage on here, but I may try at some point. And now for today's update!

The big news I mentioned last time has not been finalized yet, so we're all still waiting on that. Sorry. But we do have other big news. Owen had a cardiology appointment today, and his catheterization is scheduled for August 27th. The cath will be done to check out his heart prior to his next surgery, the Glenn. Dr. Parikh, one of our four cardiologists, said Owen's heart sounds very stable and good today, and we have no reason to believe we will end up needing the Glenn before October. In fact, if Owen's heart function remains this good, we may wait through the winter before having the Glenn. What we want to avoid is having the Glenn during the winter, since that is the high season for infection. This surgery is usually done between 6 and 9 months of age (6 is October, 9 is January) but can be postponed longer if heart function is good enough. I want to do what's best for Owen, but I definitely prefer October. I'd hate to get in a situation where we have to have the Glenn emergently in the winter.

Aside from scheduling the cath, Dr. Parikh was happy with how Owen is doing. We also saw Dr. Escobar (developmental pediatrician) today, and he is downright thrilled with Owen's progress. According to their info, Owen's height and weight, while extremely low, are tracking along the curve. This means his growth rate is normal, even if he's very small for his age. His weight is 3rd percentile, and his height is not even on the curve. Dr. Escobar also looked at Owen's current motor skills, and was pleased with those as well.

Speaking of motor skills, Owen has been showing off lately. Yesterday he started reaching out and grabbing the toys on his gym. He also reaches out and grabs toys while lying on his side. He has one toy that is a cube, and when you push each side it plays a song. He is able to push the sides and turn it on, although I don't think he realizes he's the one doing it! He just sees it light up and wants to get at it. It's handy that he can turn it on by himself, though!

Dr. Escobar also suggested we start Owen on solid foods. So today we experimented with rice cereal, with mixed results. He doesn't seem to care for it too much (I think I mixed it too thick) but he doesn't push it out of his mouth, either. He sort of moves it around until he accidentally swallows it, or I give him the bottle to wash it down. I think if I mix it a little thinner, he'll have an easier time swallowing it. I forgot to say it, but you've probably already guessed he's eating again. I don't know what his issue was over the weekend when he was refusing the bottle. I took him to the regular pediatrician on Monday (he needed vaccinations anyway) and she could find nothing wrong with him. That day he just up and started eating again. He's not back up to eating quite as much from the bottle as he was before, but we're at about 50/50. I'll definitely take it!

We have PT, a visit with Mark's family, and the Feast of St. Alphonsus (our church's patron saint) tomorrow. So it will be a busy day! On Saturday I graduate from Purdue's Doctor of Pharmacy program. This has been a long time coming (I've been in college 10 years!) and it feels like such a huge accomplishment. Especially given what we have gone through in the past year. God has been so good to us through it all. One more example of just how good: we found daycare for Owen. Not only did we find what seems like a great, loving in-home situation, but he will be cared for by a woman who was formerly a NICU nurse for 27 years. We found this person through a post I put out on a website. We got ONE response, and it was her. How amazing is that? We just keep getting taken care of so completely. See what prayer can do??!