Camden Paige

Our newest little Frossard, Camden Paige, arrived on 12/12 at 1:09pm. It was an easy induction, and she was born quickly. Too quickly, actually, because she aspirated amniotic fluid and developed pneumonia. It sent her into respiratory distress, and she had to be admitted to the NICU, where she remains. Which is why I haven't felt much like updating since she was born.

At this point, she is off of her antibiotics and oxygen, and is pretty much like any other normal newborn, except she doesn't eat very well. So in the NICU she has to remain until she eats an appropriate amount and gains weight. This is so heartbreaking, especially so close to Christmas. We don't think she'll be able to come home before Christmas, and it's really putting me at the end of my rope. We've had so much great support from family and friends, helping watch the boys so we can spend time at the hospital, bringing meals, and just checking in on us. But the fact is I just want my sweet baby girl home so we can be a family on Christmas.

We are grateful that this is something she will recover from and that she should go on to be a healthy child. I just can't help but be sad and miss her, too.

Happy December!

Can I just say, I'm so excited December is here?! It's such a fun month! While Christmas shopping and preparations can be stressful, I truly enjoy the challenge of finding that great gift for each special person in my life. It's especially fun when I can get creative and surprise them with something they really love! I usually put a lot of thought and care into choosing and wrapping Christmas gifts, and it's that much more fun to watch people unwrap them.

Santa already has a list for the kids, and most of our Christmas cards went out today. There are still a few people I need addresses for (if you are one of my friends who has moved within the past 6 months, I'm talking to you!) Our Christmas decorations are up, and I love turning on the Christmas tree lights and relaxing in the living room. I started making Christmas cookies yesterday, and I hope I have the energy to make lots this year! This is the year I plan to tackle my granny's famous nut rolls, finally!

Mark and his dad painted the baby's room last weekend. I'm still getting used to calling it the baby's room instead of the guest room. Mark put together the crib (yes, we now have THREE cribs in our house) and my friend Andrea helped me get the mattress in it. I washed all of the 0-3 mos. clothes, and I think we have enough, depending on how much she spits up!

Owen saw his regular pediatrician today. He didn't have to get any shots, but the doctor is very concerned about his continued vomiting. So she's going to contact his developmental pediatrician to discuss a trial of Reglan. Years ago, I would have been against this for him, but now I'm open to it. SOMETHING has to change for this child; he simply cannot go on vomiting like this, several times a day, forever. Not to mention the fact that this is something our growing family cannot continue to handle, either.

Owen also had a great therapy session with his OT and DT earlier this week. He did fabulously and was so fun for them to work with. I wish every session could go that well! We are getting re-started with speech tomorrow and PT on Monday. I hope he is the sunny version of himself for them, too!

Baby Girl hasn't shown any new signs of arriving anytime soon, so we're still looking at December 12th for my induction. Gavin is still as cuddly and talkative as ever, though we're starting to work on not hitting. In all, we're having a good week, though I sort of wish I could fast forward to the 12th!

These Days...

These days... I have at least a dozen contractions a day. Sometimes they're spread way out, and sometimes they're right on top of each other.

These days... Baby Girl has DROPPED! She's down so low that the nurse often has trouble getting a steady reading of her heartbeat for the NSTs. I have to lie almost flat on my back for her to find it.

These days... The Christmas decorations are up at our house! The shopping is almost done! I'm excited to enter the holiday season with a new life in our house!

These days... Owen feels more and more like himself. He sings songs with us (or rather, he does the motions). He laughs and plays. He crawls around. He's making more vocal sounds. And he's willing to taste food.

These days... Gavin is a clingy, snuggly little guy. He does NOT like us to walk away from him, and has reverted to demanding that I carry him up and down the stairs (he can, and used to, do this perfectly fine on his own a couple of weeks ago). He has so many words! He says "more, peas" (more, please), "ah done" (all done), and his favorite: "no." He pats Owen lovingly on the head, but he also steals his toys. Today he spilled some milk on the floor, walked over and got one of Owen's cloths, and bent down to wipe the carpet. In many ways, he will be our oldest child, and I know he'll be a fantastic brother to Owen.

These days... I don't know what to pray for when it comes to Owen. His surgeries are over; there is not much more that can be done for his heart. Do I pray for a long life? Or a life with minimal pain and procedures, even if it means he leaves us sooner? I get the impression that he won't be able to have both, and as his mommy it sometimes makes me yearn to place him in Jesus' arms to receive His healing and be free of all this. Then I feel guilty for even considering that Heaven may be the best place for him.

So I guess these days, as always, we could really use prayer that God will guide us in the right direction as a family, that He will make it clear what decisions we should make to follow His path. After all, Owen WILL be in Heaven someday. Mark and I have a responsibility to continue to follow God's will so we can get there, too.

Cardiology Update

Today I took Owen to see his cardiologist. After a chest x-ray, EKG, and ECHO, the verdict was in: Owen's heart looks great! We're obviously very happy with this outcome, but it's not quite that cut-and-dried yet...

Even though Owen's heart function looks great, and he's pinker than ever, his sats are still only 75%-ish. Not what we had hoped for or expected, and not good. I spoke with the surgeon about this today, and he said that Owen's x-ray actually still shows some shadows, indicating that Owen still hasn't fully recovered from his post-surgical infection. So what does this mean? For now, it means that we continue our current drug regimen, and give him more time to heal. We go back to the cardiologist in 1 month, have another chest x-ray, and possibly change things up then.

In the longer term, it means that Owen's fenestration may have to be closed soon. This involves a cath and overnight hospital stay. In our world, this is soooo not a big deal. Weird to say that, when many parents freak out over their little ones getting ear tubes! =) The fenestration closure is something that's on the table, and I'm sure we'll revisit it at the next appointment.

In all, it was a good visit. I was hoping to get rid of some of these post-op meds, but it will just have to wait a little longer. At least Owen only has to have the penicillin for 2 more days - it's wreaking havoc on his poor little digestive system! =(

Whew...

It's been a long couple of weeks, and yet somehow still a whirlwind. Owen is home from the hospital. He came home last Wednesday on oral antibiotics and with his same post-op heart meds. We follow up with cardiology next week. Overall, his operations were successful. The problem now is that we simply can't control his pain. We were told when we left the hospital that we should keep him on scheduled Lortab/Motrin for the first 24 hours, then go to Motrin only with Lortab as he needs it. Well, he has continued to need it up to and including today, and we only have about 1 dose left. The poor kid is just in pain, and he usually is not calmed by Mom and Dad or any of his favorite toys. We're definitely getting him weaned off the medication; it's just taking longer than we had anticipated.

As we settle back into our routine, Gavin has changed a bit too. Although I know he loved his time away with Mimi, he definitely is more clingy since he's been back. He cries more readily if we walk away from him, or if we're holding Owen instead of him. It's going to be even more of a shock to him once the baby comes. We'll just have to make sure to give him lots of hugs and kisses, even more than we already do.

And speaking of Baby Girl, the NSTs are going fine. She is always reactive and looking great. As of last Sunday, though, I have been having contractions. I'm sure they're just Braxton-Hicks, but they're still uncomfortable. Actually, I'm having one right now. Goodness, am I ever ready for this baby to be born!

Since being home, I've felt like I'm able to make more progress on getting ready for the baby and Christmas. I have my Christmas shopping about halfway done. And the truth is, we have almost all the supplies we need for Baby Girl, so we're ready in the most basic sense. But of course I'm nesting, and I want to make sure the room is just so, and the house is clean, etc. I might need not to expect so much of myself, but it's driving me crazy that everything isn't done and perfect around here.

And that's just sort of where we are, with less than 4 weeks to go before Baby Girl joins us!

PICU Day #6

I find it somewhat darkly amusing that we've spent more time in PICU for this complication than we did after Owen's actual heart surgery.

Owen continues to look better since his procedure yesterday. He is draining a substantial amount of fluid, but not gobs and gobs. He's had about 90 mLs come out since the procedure. He is breathing much more easily and getting a little more feisty. But he still glares daggers at anyone who comes near his bed.

We could have moved to the floor today, but the floor is full. So we're hanging out in the PICU until someone goes home from the floor. It likely won't be until tomorrow that we get to move.

I have a slight sore throat today, and I'm hoping hoping hoping that it's just irritated and not progressing toward strep throat. Wouldn't that be fun, on top of everything else??

There's not much more going on right now; just playing a waiting game at the moment.

-Adrienne

Sleeping

Owen is currently sleeping peacefully, for just about the first time in two weeks. He went to the OR this morning for a VATS procedure. The surgeon used a video camera to guide him as he put his instruments through small incisions in Owen's side and cleared out the "gunk". He described it as hard cheese. There was also a mucoid layer covering the side of Owen's right lung, and the doctor was also able to remove that layer. Owen seems MUCH more comfortable, and has been sleeping since he got back from surgery about 6 hours ago.

At this point, we are back to where we were a couple of weeks ago. Owen has a chest tube to drain the remaining fluid (and any more that may build up). The first step toward home is for this drainage to dry up and for x-rays to confirm that he looks clear. Then the tube can be removed. The next step is for him to get converted to oral antibiotics. Somewhere in there he also has to tolerate coming off oxygen. Then we can go home.

We're back to not knowing how long any of this is going to take, and while that's frustrating, it's also so nice to know that, for the moment, Owen is in recovery mode again. We hope and pray this will continue and that he can come home very soon! We miss being home as a family... Plus, I keep having somewhat startling reminders that Baby Girl is coming in less than 6 weeks and we are sooo not ready!

-Adrienne

Surgery

It's been a long day. This morning, Mark's dad brought Gavin to me at the hospital. He then sat with Owen while I took Gavin to his well child check-up (everything great there). I was really hoping to have some concrete answers before I left with Gavin, but no such luck.

When we returned, it was a different story. Owen's heart surgeon had decided to try placing a chest tube to drain the fluid (which is growing group A strep, an easy bug to treat). He tried this at 4:30, without much success. So now we are looking at a surgical procedure tomorrow to open up Owen's chest and try to break up some of those "compartments" where the infection is. Then it can drain fully, and the antibiotics should take care of the rest. We are looking at antibiotics for 3-4 weeks, but given the fact that it's an easy bacteria to treat, we should be able to switch to oral and go home with it, rather than wait out the course in the hospital.

But... My guess is we won't be going anywhere until at least the end of the week. =(

My mom took Gavin back to Seymour with her, so it will be nice for Mark and me to be able to be here at the same time while Owen has his procedure. I'm sure Gavin will have another grand time playing around the coffee house and eating ice cream. I miss him already, though.

We are still living at the hospital with a very grumpy and miserable little boy. Surely *sometime* he's got to start feeling better? I personally have not seen him smile in 2 weeks.

-Adrienne

In Limbo

Well, we still don't know much.

Yesterday, Owen had a CT scan to determine where the fluid in his chest was located. Turns out it's in loculations (sp?) along his right side. This means there are several pockets of fluid, as opposed to one large area. Yesterday evening, the ICU drs. sedated Owen and removed some of this fluid by inserting a needle into his side. This fluid was being sent for testing to determine whether it was simple post-op fluid accumulation, or whether it was an infection. We have not heard the result of this test.

Our cardiologist told us if the fluid is found to be an infection, Owen will have to have a procedure called a thoracotomy performed in order to remove it. This involves opening up his chest to get all of the infected fluid out. My goal this morning is to find out for sure whether Owen needs this.

In the meantime, I think we'll be here at least another day before cultures/sensitivities come back (and that's an optimistic estimate).

Oh yeah, and he could still have pneumonia on top of all this. At this point, I'm starting to worry that he won't make it home before I have to go back to work on Sunday. =(

-Adrienne

48 Hours

...is how long we were home. Yesterday, when I got Owen up from his nap, he just looked terrible to me. He was sweating with the labor of breathing, and his abdomen and face seemed much puffier than before, as though he were retaining fluid. So I paged the cardiologist, who met us at the ER just to check things out. I was positive I was just being a paranoid mom and everything was fine. Then the doctors did the following math:

White count of 26 + O2 sats of 67 + super fluid overload + hazy chest x-ray = Readmission

Poor bubby. So he spent the night in the ICU, and he is receiving at least cefotaxime. I also heard the dr. mention vanc, but never actually saw that get started last night. Mark and I both stayed here last night, and Mark's dad very graciously stayed with Gavin, who seems to have a little stomach bug of his own.

So, hopefully today we'll get more of what the plan will be for Owen this time. If his cultures come back growing anything, he'll definitely need a full course of antibiotics. Depending on what they grow, we could maybe go home in a few days with him on orals. We'll see.

-Adrienne

Baby Girl Update

Yes, I'm pregnant. For the 3rd time. In 3 years. This little one was always in our plan, just maybe not quite so soon! But we've been very blessed with what appears to be a healthy little girl. So far, things have gone well during the pregnancy, aside from me being somewhat uncomfortable pretty early on. But about a month ago, I went to the doctor and was informed she was measuring over 3 weeks big.

Say WHAT?!

Those of you who were around at the time may remember that Gavin was 9'9" when he was born, and I never measured big with him at all. So this was a pretty big concern.

BUT, I went to the doctor yesterday, and everything looks great! I had an u/s to size the baby. Her head and tummy measurements are just on either side of 33 weeks (which is what I'll be tomorrow). And it appears she weighs approximately 4'12". That means she should be roughly 8 lbs. at 39 weeks. If all continues to go as it has, I will be induced then, on or about Dec. 12th. I just realized that means her b-day would be 12/12. That sounds pretty cool to me. =)

And overall, I've gained about 17 lbs, which I'm happy with since I have gestational diabetes. These next 6 weeks before she arrives will be busy - we may try to do some painting, and there's a possibility I'll break down and keep each child in his/her own room for a while, so there will be the work of preparing a room for her. But this will be mostly with things we already have, plus some possible craigslist/freecycle finds. I'm still on the fence about this (the original plan was to move Gavin in with Owen and have Baby Girl in the nursery), but I'm starting to think my sanity may be saved if we just leave the boys apart until they're both going to bed without tears. Plus, Owen still has middle-of-the-night "parties" in his room (I hear him talking to his toys when I get up to go to the bathroom), and I'm not too keen on him waking Gavin to join in. =)

In the end, we're excited and busy, and the baby looks great!

Great News

We're HOME!

I had a terrible time updating the blog at the hospital; there was some kind of connection issue that wouldn't allow me to sign in. Last time I wrote, we were watching Owen's chest drains and oxygen saturations. I'm happy to say that none of the complications we thought may happen ever materialized. His drainage gradually decreased, and his saturations gradually increased. It took time, but on Wednesday this week, his chest tubes were removed. And yesterday we got to come home! I will be taking Owen back to his cardiologist for a follow up on Tuesday.

The hard part right now is that Owen just is not himself. It's hard to figure out what's wrong. He doesn't seem to be in pain; it's more like he just can't get comfortable. He doesn't want to play, barely tolerates being held, and hardly ever smiles for any reason. We're just missing our sweet little guy, and hope he feels more like himself soon.

Meanwhile, we don't really have any plans for this weekend. We may go out and get some pumpkins for the boys, and we probably we dress them up on Sunday for Halloween. But we won't go trick-or-treating - nobody here needs that candy!

-Adrienne

POD #2

Things look so much better this morning for Owen! He is regularly satting in the high 80s to low 90s, his heart rate is in the 120s, and his blood pressure is perfect. He is resting as comfortably as he can and isn't complaining much. Such a strong little guy!

His chest tubes continue to put out quite a bit of drainage. That's not concerning, but we will be looking for that to start slowing down soon. He did end up being extubated yesterday afternoon, and there has been no more blood seen from his lungs. So that continues to be a mystery, but we're just thankful it's gone. Owen's Foley cath and arterial lines have been removed, and he is having his first feeding since surgery. Things are definitely going well today.

Owen was seen by a physical therapist this morning. She checked his range of motion and helped him sit up for a few seconds. He didn't care for sitting up, and made his feelings clear by pushing back to lie down again. The therapist is going to recommend PT 3-4 times per week while Owen is here. An occupational therapist and speech therapist will also start seeing him today.

In Gavin news, he comes home from Seymour tonight! He has been staying with Mimi and Ray since Tuesday. From the stories I've been hearing, he probably doesn't care if he ever sees Mark and me again! According to Mimi, he's been behaving well and having a great time. We sure do miss him, but it's also been a blessing to be able to focus on Owen this week. I'm ready for some of those great Gavin hugs and kisses, though!

Thank you all so much for your prayers and kind wishes. Mark and I are hanging in and we are so thankful for all of your support!

-Adrienne

More News

Right after I finished the last update, our surgeon's NP came to talk to us. Seems Owen still has a couple of things going on that are concerning. First, he has some significant fluid built up around his left lung. So now he gets his very own left side chest tube to match his right one. Second, his ventilator has to be set pretty high to help him breathe right now. This means that the pressure inside his lungs is high, and we don't know why. It may be due to the fluid. Once that is drained, we'll know more. And third, and most concerning, as they were suctioning Owen, he had some blood-tinged fluid come out of his lung. They checked his chest x-ray, and it does not look like he is hemorrhaging from his lung. However, they still don't know where this blood came from.

So in the end, it looks like the ventilator will stay for a little while yet.

He sailed through the first two surgeries so easily. I guess we were "due" for some complications. Our hearts just break for him though. Still praying for him not to be in pain, and not to be scared.

-Adrienne

A Good Morning

It's been an eventful day so far, in a good way. Since Owen was still having so much trouble this morning, his surgeon and cardiologist decided to take him to the cath lab and have a look at his heart. As it turned out, the connection the surgeon had made yesterday between the inferior vena cava and the right pulmonary artery had significantly narrowed. The cardiologist placed a stent to widen that connection, and immediately Owen's sats increased to the 80s. This is great news!

He is coming out of the cath lab and getting settled back in the PICU right now. He is still on the ventilator right now, since he was already fatigued from breathing so hard overnight, and now anesthesia has been added on top of that. So he'll stay on it and take a little break for now, but it likely will not be long before they take it out.

We did learn something else from this cath. Owen's pulmonary pressures were much higher than acceptable, and they remained high after the stent was placed. This is going to be a "wait and see" situation as to whether they'll ever decrease. In the meantime, there are medications that can treat this.

With the placement of the stent and the high pulmonary pressures, we are definitely looking at another cath in the future to check these out, and possibly place a larger stent as Owen grows. But compared to open heart surgery, we'll take it!

It's been a good morning, and we're looking forward to seeing Owen be much more comfortable once he is settled and off the vent.

-Adrienne

"I Don't Think Anything Here is Life-Threatening"

That was the theme of yesterday afternoon and overnight. After surgery, Owen's O2 sats remained much lower than the surgeon would have liked to see. He also developed a right-side pneumothorax (pocket of air in the right side of his chest). His respirations were fast and shallow, his blood pressure was low, and he was tachycardic (fast heart rate).

Sooo...

A chest tube was placed to drain the air. After more chest x-rays and an ECHO, this appears successful and no other air or fluid buildup was seen as of last night.

After surgery, he was on a dopamine drip. Then milrinone was added. Then epinephrine. These are all drugs to help keep his blood pressure up and maximize the efficiency of his heart. He also got several infusions of fluids, albumin, and another blood transfusion. After the loss of fluid during surgery, he needed a boost to get some volume back in his system.

He is on 3L of oxygen via cannula, and there really wasn't much to be done last night about his sats except wait and see. His fast respiratory and heart rate may have been pain related, but even after he got doses of pain medicine, they remained high.

In the end, last night we didn't really know what was causing a lot of these issues. The surgeon came to see him late in the evening, evaluated him, and made the statement that I used as the title of this post. We seemed to be chasing our tails with him, and didn't know why.

This morning, the picture looks a little different. Owen has been able to come off the dopamine, and they are weaning his epinephrine now. His blood pressure has stayed up during this changes, which is good. His sats are still low, sitting in the high 70s to very low 80s. Dr. Abraham (our surgeon) expected the sats to be in the mid to high 80s, if not 90s. So there's a possibility that Owen will need to go to the cath lab today (or at some point during this hospital stay) for some tweaking.

His respirations are still in the 40-60 breaths per minute range, and his heart rate remains around 160-170 (yesterday it was 180-200). With every breath, he lets out a little whimper/grunt. It's obvious he is very uncomfortable, but he doesn't necessarily seem to be in pain.

So today, we're waiting for Dr. Abraham to see him and make a decision on whether anything else needs to be done today, or whether we should give Owen's heart more time to adjust after surgery and see if his condition improves.

And that's where we stand.

-Adrienne

PS- I'm sorry I wasn't able to update this last night. First, things were just too up in the air and I didn't want to leave his side. Second, once Mark brought my laptop in, I couldn't sign in to the blog. Hopefully I'll have more luck today.

Quick Update

Owen is through surgery and things have gone pretty smoothly so far. He is being settled in the PICU and we have not seen him yet. I'll write a more detailed update later. Things are going well!

Prayer

I saw this at the hospital during Owen's pre-op testing today. I couldn't look at it without welling up.


We are nervous about Owen's surgery tomorrow, but we know that he is in good hands. I have always had the same prayer for Owen, and I still have it now. I am praying that he have as little pain as possible, and that he feel peaceful.

Owen's surgery will start around 7am tomorrow morning. We would appreciate any prayers for him, and we will update this site as we are able.

-Adrienne

Family Day

We wanted to have a day together as a family before we got cooped up in the hospital, so we went to ZooBoo on Sunday. The boys wore their costumes, and we had a great time!

Getting ready to go inside

I loved checking out the fish!

Cheese!

Daddy and I saw some ducks in the pond

I looked like a big boy in my scarecrow costume

It was a great family day, and with the baby coming, it was probably our last day out this year!

Welcome!

I've decided to start a new family blog. My previous blog focused on Owen and his health, and when that began to stabilize, I found myself with nothing to write about (a good thing)! So, here I will focus more on our whole, growing family. A little about our little ones...

Owen was born in April 2008, with partial trisomy 10q and hypoplastic left heart syndrome. He has had 2 open heart surgeries, and his third is coming up in just a few days. He loves Mickey Mouse, Elmo, and his brother.

Gavin was born in April 2009, and he is healthy. He loves to RUN, climb up and down the stairs, and carry around socks and shoes. He's been talking up a storm recently, and we love to hear all of the new words he says.

Baby Girl is due in December 2010, and she also appears healthy. We are excited to add a little girl to our family; all those little bows and dresses sure sound like fun!

We will be using this blog quite a bit over the next couple of weeks to send updates about Owen's condition. Please feel free to peek in on us now and then!

-Adrienne