Sunday, October 31, 2010

48 Hours 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.


Saturday, October 30, 2010

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!

Friday, October 29, 2010

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!


Thursday, October 21, 2010

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!


Wednesday, October 20, 2010

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.


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.


"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).


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.


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.

Tuesday, October 19, 2010

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!

Monday, October 18, 2010


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.


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!


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!

Saturday, October 16, 2010


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!