Wow!

Hard to believe it's been so long since I posted! We've been incredibly busy with the boys. They already look so much older than the pictures I posted in June!

This month is a doctor-heavy month for us. First up was the developmental pediatrician. He was very pleased with Owen's growth, interaction, and overall appearance. He pretty much told us to keep doing what we're doing for now, so we're in a holding pattern with his therapies and feeding.

Next was the regular pediatrician; both boys saw her last Friday. And they both got shots. It was a little hairy - they were both really unhappy at the beginning of the visit, but they eventually calmed down and we got things taken care of. Gavin is 50-75th percentile for height, and 25-50th percentile for weight. So he's like Owen, longer than he is heavy. But unlike Owen, Gavin actually has a chubby tummy on him. It's adorable. =) So as of Friday, Gavin weighed 13 lbs 14 oz, and Owen weighed 18 lbs 7 oz. It won't be long before Gavin is overtaking his big brother in the weight department!

Next up is the pediatric ophthalmologist on the 26th, and the cardiologist on the 31st. That will be the big appointment, the one we're most anxious about. I have a feeling the cardiologist will look him over, do an ECHO, and release us for several more months in order to let Owen grow more before his next surgery. Everyone (medical professionals included) keeps telling us how great Owen looks, especially his color. And he really doesn't appear to tire out terribly easily to us. So I really think there will NOT be a surgery this fall, and that it'll happen closer to next fall. But we'll see. We may go in and find out his heart function really isn't so great after all. We're praying that's not the case.

Developmentally, Gavin was ahead of the game with rolling; he started rolling over both ways when he was just over 3 months old. It was a little sad for me. In fact, I cried when I first saw him roll over on his tummy. I'm happy he's growing and developing well, but it just seems too fast!

Owen is sitting on his own very well lately; in fact, he's started to appear much more comfortable and "normal" doing it. His favorite toys right now are his star stack up tower and his Duplo table. Today while he was playing with his Duplos, he stood up from his chair all by himself! He still is unable to transition from lying down to sitting, or from sitting on the floor to standing. He just doesn't want to put any weight on his hands. This is one of the main things we're working on in therapy.

And that's about it - everyone really is doing great and we're very thankful for Owen's continued good health. We still are able to function fairly normally as a family, and we're having a wonderful time being the parents of two sweet little boys!

Whirlwind

Well, a baby came! Gavin Drew was born at 12:50pm on April 11, 2009. He's our bruiser at a whopping 9lbs 9oz and 21 inches long. We went in to the hospital at 6am that day. I was hooked up and getting Pitocin by 7:30, had an epidural placed around 9:30, and was ready to push by 12:30. Pushed through two contractions and Gavin arrived! We were thrilled to meet our new baby boy.

Since then...

I fell in the hospital and hurt my foot. Thought it might be broken, actually. Got it x-rayed and found out it wasn't, thankfully. But still, I could barely walk for several weeks. It made taking care of two babies really difficult for a while, but it's all better now!

In the meantime, I spent 6 weeks at home taking care of Owen and Gavin. 5 of those weeks were by myself, and I must say, I don't know how you stay at home moms do it! They rarely slept at the same time, but they inevitably needed fed at the same time. It was enough to drive me bonkers, although I did love that I had the time to spend with them. That said, I've been back at work for a week now, and it's nice to feel like a grown-up again!

Pictures coming soon!

ONE YEAR!

It's been such a long time since I updated that I hardly know where to begin! Today is Owen's first birthday. Twelve months ago today, he came into the world, we got a short glimpse of him, and he was quickly taken away. About two hours later, we got to see him and hold him for a bit. And then not again for several days. We got to hold him the day before his first surgery, and that morning before they took him away. And then not again for several days. He went back to the NICU and remained there until he was 2.5 months old. We saw him as much as we could, while also preparing for a move and with me trying to finish school. One year later, I don't really understand how we made it through all this, except by the grace of God.

So what is Owen like today? The little boy who could easily not have survived his heart condition, who easily could have been so affected by his chromosome abnormality that he would be completely unresponsive to us, is thriving! What's new with Owen? Well...

1) He can sit on his own, unsupported, for short bursts of time while he plays with toys. He loves to stand. He needs help with balance, but he supports himself and tries to take steps (yikes!) He is not very close to crawling, but is getting there. We will insist with him that he learn to crawl before walking, since crawling is tied to good language and speech skills later on. We are in PT and OT to accomplish these goals.

2) Owen has two teeth, and a couple more on the way!

3) At this point, he is completely G-tube fed for his formula. He started refusing the bottle around Christmas, when his first tooth came in. We are in speech therapy to work on this, and the therapist is optimistic that we'll get the bottle back. Aside from formula, he hates baby food, but loves to try what's on our plates!

4) Owen definitely recognizes strangers now, and has become a bit of a mama's boy. He loves to cuddle.

5) His favorite games are to see his daddy hop around like a bunny, see his mommy take slow steps toward him and tickle him, and see his soft toys get thrown around. He laughs up a storm anytime we do these things.

6) His favorite toy right now is his red bird that chirps when you squeeze its tummy. It can bring him straight out of a shrieking fit into smiles and coos.

7) Finally, and best of all, his heart function has remained great! It couldn't be any better given his funky anatomy. In fact, we last saw cardiology in February, and they released us until the end of AUGUST!!! Much, much praise to God for this blessing! The truth is, we *never* worry about his heart. Isn't that amazing?!


We know his next surgery is coming, either this fall or next fall. But we are at peace. Our baby boy is a joy to us, and whatever time we have with him is the time we're meant to have. We are thankful for it all.

The next several days will be big for us. Baby Frossard #2 is coming by scheduled induction next Friday/Saturday, April 10/11. We go in that Friday evening at around 5 for me to get checked, and if no dilation has occurred (as was the case with Owen,) they will give me some medicine, and we'll go from there. The reason I think we could still have the baby Friday is because Owen's induction began at 6pm and he was almost born that same night!

In the meantime, we are trying to get our house straightened and cleaned. The boys' rooms are almost completely finished. Owen has moved into his new, bigger-boy bedroom, and the nursery is put together for Bean. I feel the nesting instinct, but I am too tired to act on it! We let our house go so much that it's all we can do just to complete a decent cleaning.

I plan to start updating regularly again, especially now that Owen is getting a new baby brother to interact with! I have lots of pictures to post, once I get them downloaded. Owen was pretty cute with his birthday cupcake last night, though he didn't actually eat any of it. He definitely didn't inherit too much of my sweet tooth!

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. =)

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!

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!

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!

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!

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!

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!

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! =)

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.

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!