Saint Marys - Day 16

Garrett's echocardiogram this morning showed his heart still has more of a workload than normal (which we expect to be the case until additional arteries are embolized to reduce the blood flow sufficiently), but it's less than what it was before his second procedure. Dr. Eidem, Garrett's cardiologist this week, mentioned that the pressure in his heart is still a little high, but quite a bit lower than it was before the additional embolisms. Considering he was on two additional medications then, and three doses of Lasix, versus one dose now, that shows just how effective the second treatment was.

I still haven't completely figured out how to make sure he keeps his food down. Sometimes he'll throw up an hour after a feeding, even if I finished the feeding by trying to burp him for several minutes without even a hint of a burp escaping. One of the nurses suggested laying him on his right side afterward to help empty the stomach. I'll give that a shot and see what happens. I've also been holding him upright against my chest afterward, and that seems to help sometimes, but not every time.

It's been a few posts since I've included pictures (and I know grandparents in particular appreciate seeing them), so here are a few more.

Thanksgiving Dinner
Jean and Steve brought Jonathan out so we could have Thanksgiving dinner with him. We enjoyed the meal in Saint Marys' cafeteria. (I can't tell you how it pains me to put the apostrophe after the "s" in "Marys." I really wish the nuns had enough of an appreciation for proper grammar to follow it and let go of their angst over possessiveness when they named the hospital.) It was getting close to 7 p.m. and the cashier made sure we took several turkey-shaped cookies off their hands, since they would only be thrown away otherwise.

Garrett
Below are some pictures of Garrett from today. He just looks so peaceful when he's sleeping.

He definitely has the Rossing nose.

The hair on the back of Garrett's head is just a touch oily from the Skin So Soft (thanks, Jan!) I've been using to slowly work out the dried up glue gobs from his EEG over a week ago. I finally got the last of it out today.

Jonathan has Chris' wide hands, but Garrett has my long, slender fingers.

Saint Marys - Day 15

There's not much new and exciting today, either. Garrett's respiratory rate still seems to be high, although nobody said anything about that at rounds this morning. When I last asked about it, it sounded like they think it will just slow down over time. Perhaps his body is just adjusting to the changes in blood flow.

Last night Garrett was still throwing up a lot, but he's done much better today. Other than spitting up a little (well, a moderate amount, but not an entire stomach full) when I fed him at 3, he's pretty much kept it down all day. I think I just needed to back off a little and not try so hard to get him to eat and gain weight. He does a great job eating, but maybe I wasn't giving him enough credit. Maybe I've been encouraging him to eat longer or more frequently than he needed to and his stomach just couldn't handle it.

Taking a more relaxed approach, together with being better about burping him and not nursing him if he couldn't eat and breath at the same time, seems to be making a difference. We'll see what the scale says tonight and tomorrow. His weight was down a little this morning from yesterday -- which I expected, considering how much he's been throwing back up, but it was a little disappointing nonetheless.

He has another echocardiogram scheduled for some time tomorrow. I'll be eager to hear what the cardiologists have to say about the results. They seem to be pleased with Garrett's progress so far, so I wouldn't think there'd be any problems, but their conclusions will play a factor in how soon we get to go home.

The neurologists and neurosurgeons still seem satisfied with how Garrett is doing, so it looks like it comes down to the cardiologists and pediatric care team being comfortable with his condition before sending us home.

Saint Marys - Day 14

Yesterday and today were pretty much the same: waiting and watching. I think what they're watching the most right now is Garrett's weight. He was up just a little from two days ago to yesterday, but down some from yesterday to today.

The frustrating thing is that he eats really well, but a lot of the time, he throws it all up again -- and I mean all. Sometimes I wonder if he's even throwing up part of what he had at the previous feeding. I thought if I could get a handle on the burping, that would help keep it down, and it seemed like that was working last night and this morning. This afternoon and evening, however, it didn't seem to matter how often or how effectively I burped him. He still threw up a lot.

My new theory is that when his respiratory rate is high, he has trouble coordinating breathing and swallowing, so he gets more air in his stomach than he should. In addition to the frequent burping, now I'll be careful to not let him eat unless he's relaxed enough to swallow in a controlled manner.

Tomorrow will probably be more waiting and watching, too. I think someone mentioned the cardiologists wanting another echocardiogram of Garrett's heart next week. I'm hoping that can happen Monday, because this place is starting to feel like a prison, and I hate the thought of a test holding us up any longer than we have to be here.

Here's hoping Garrett eats really well tonight (and keeps everything down) so he can be nice and hefty for tomorrow morning's weighing and encourage the doctors to send us home soon.

Saint Marys - Day 12 - Happy Thanksgiving

Happy Thanksgiving, everyone! While Saint Marys isn't the ideal place to spend the holiday, we do have a lot to be thankful for. Garrett made it through his second procedure all right, and looked good enough this morning that they sent him out of the PICU and back to the general floor already.

Dr. Cloft said they embolized three more large arteries with yesterday's procedure, and commented that three is about all Garrett can take at a time right now. He mentioned that if they could have closed off one more during Garrett's first procedure, that probably would have been all he needed. Although embolizing one might have been enough to reduce the strain on his heart and send him home this time around, they weren't going to waste the opportunity and decided to get as much as they could. Dr. Lanzino even commented that one of the three was probably the largest one Garrett had.

Dr. Cloft and Dr. Lanzino are two more of my favorite doctors. Not only have they done an excellent job getting Garrett through these tough treatments, they also have a generally reassuring demeanor, like Dr. Arteaga, that parents need as badly as we need air to breathe in times like these. (Not that it affects patient care, but Dr. Lanzino also has a wonderful accent that I could listen to all day.)

There are still a number of arteries shunting directly to the vein, so Garrett will still need to come back for more procedures when he's bigger. However, Dr. Cloft also mentioined that sometimes the smaller arteries clot off on their own over time. He said he didn't want to get our hopes up, but if we were praying for a Christmas miracle, that'd be a good one to pray for. Did I mention that we like Dr. Cloft, too? =)

Garrett's cardiologists thought he was doing so well this morning that they've adjusted his medication again. They were even quite impressed that they couldn't hear the bruit (the whooshing sound of blood flowing) through his fontenelle anymore. After the procedure yesterday, they decided to take him off the digoxin (medicine that helped give his heart a "stronger squeeze"). And ater checking on him this morning, they decided to eliminate one of the two diuretics he's been on and reduce the other one, Lasix, from three times a day to once a day.

This afternoon, however, the pediatric inpatient folks have noticed he's still breathing somewhat fast (although looking much more comfortable than before) so they're talking to the cardiologists about switching the Lasix to twice a day instead of once to see if that makes the difference. Either way, depending so much less on medicine must mean they feel the heart is coping quite well on its own.

He was really sleepy after the breathing tube was taken out yesterday. He was kind of waking up from the sedation and getting agitated with it, and just as the nurse was getting ready to take it out anyway, I guess he pulled it most of the way out on his own. Chris said he must want to get out of here as badly as we do. At this rate, he'll be driving himself home.

Before his first breathing tube was taken out, the respiratory guy said usually infants will either be ornery cusses afterward, or will just sleep it off. Apparently Garrett takes after me in dealing with stress by snoozing. This time, the tube was taken out in the early afternoon, and he didn't really wake up until 7:15 p.m. I thought he'd wake up a few times before that, because he squirmed a little and cried for a short period, but he wouldn't stay awake long enough to eat until the evening.

After that, though, he was in a good routine of eating every two hours. Chris and I took advantage of the PICU sleep room being available, and Garrett's night nurse, Gretchen, just came and knocked on the door when Garrett was ready to eat. She always apologized for waking me up, but with the nurses taking care of changing diapers and comforting Garrett if he wasn't hungry, I told her that even with being woken up frequently this was probably the best sleep I'd be getting in a while.

As for the rest of the day, it sounds like it'll be more waiting and watching Garrett's vital signs to see how well he's doing after the procedure and with the change of medication. Grandma Pam treated us to lunch when she visited, and Jean and Steve will be bringing Jonathan out later.

Of course, we'd rather be spending Thanksgiving at home with our family, but, all things considered, this hasn't been too bad. If we were still waiting for the results of another procedure, it would be hard to feel thankful (it would be hard to feel anything other than anxiety), but now we can breathe more easlily and expect things to keep improving.

Saint Marys - Day 11 - Post Op

Garrett has returned from his surgery and they said everything went fine. It's amazing how much relief can come with those three words. I won't have a lot of details about how much of the extra flow was addressed until I talk to the doctors, but it sounds like there are still plenty more feeders to deal with when he gets bigger.

Right now, we're just waiting for Garrett to wake up. I'm pretty sure they plan on taking the breathing tube out once he's more alert. It sounds like we'll stay in the PICU tonight and probably move back to the floor tomorrow. I don't know how long we'll be there before they'll send us home. Right now, I'm just glad our little guy did so well.

Saint Marys - Day 11

Garrett was taken to get prepared for his angiogram and embolisms around 8 this morning. Dr. Cloft and Dr. Lanzino will be performing the procedure again. If it goes about the same as last time, we suspect it'll be over around noon or 1 p.m. (See a video explaining the "super glue" surgery Garrett is having.)

He'll be back in the PICU for at least a day following the procedure, so we'll be packing up our stuff and moving again.

More Embolisms Already?!

This morning we talked about leaving the hospital tomorrow (which would still get us home for Thanksgiving), but after an echocardiogram was done on Garrett's heart to investigate his increased respiratory rate, the cardiologists were concerned about the excess blood flow they found and consulted with the neuro group to decide what to do next. Since Garrett is already maxed out for his medicine, and the cardiologists don't feel it's safe to let him go with the stress his heart is under right now, they decided he should have more arteries embolized tomorrow.

Ugh. Everything had been looking so good. He seemed to be well on his way to getting out of the hospital and growing six, twelve, or eighteen more months before having to go though that procedure again.

People have told me I seem to be handling all of this well. When the good news keeps trickling in, it's easy to grab onto that and hold on tight. But after getting tonight's news, I feel like we're right back where we were a week ago -- wondering if Garrett will be the one in five that doesn't make it through, or if he'll make it, but with some serious complications. Needless to say, I'm a wreck again.

Chris is dropping Jonathan off at Jean's so he can come out tonight, rather than wait until tomorrow. It sounds like they want to do the procedure sooner rather than later, but I haven't heard any specifics on the timing yet. They'll need to intubate him again, but the doctor I asked wasn't sure whether he'd need a feeding tube. I'm sure he'll get another IV, which means more poking. Poor guy.

Saint Marys - Day 10

Aw, nuts. They had talked about discharging us possibly as early as this evening, but when the doctors did rounds this morning, it was mentioned that Garrett's weight was down slightly from yesterday (which I'll need to check on, because I thought it was actually up just a touch) and one of them thought he was breathing faster than yesterday as well. So they want to watch him for another day.

But it's better to be on the safe side, I guess. The last thing I want to do is bring him home and have him go into heart failure again.

It was also mentioned that the neurosurgeons had wanted another head ultrasound, so he'll probably have that today as well.

For the most part, though, this will be another slow day of waiting. I suppose I ought to take advantage and catch up on some sleep. Garrett has been spreading his feedings out during the day, but last night he was up every 1-1.5 hours to eat. I hope he gets into a more efficient routine soon, but the important thing is that he's eating and gaining weight.

Saint Marys - Day 9

This was our first full day in the Pediatric Inpatient unit. It was pretty slow and quiet. They drew some blood for lab work this morning (I thought it wasn't going to be until tonight or tomorrow morning) and finally took out Garrett's feeding tube. It sounded like they didn't realize he hadn't been using it for over a day anyway.

Last night's nurse had wheeled a hospital bed into the room for me to sleep on instead of the couch, which was very nice. And Garrett's monitors hardly beeped at all (the oxygen monitor would often misread the level in the PICU, so there was frequent dinging there), so he and I both had fewer disruptions from that.

The one scare in the middle of the night was when I heard Garrett half coughing, half gagging. I was by his side in a flash (and only then remembered that I have an incision I need to be careful of -- ouch) and saw that he had managed to pull his feeding tube out a little. He had been looking for his fingers, and accidentally got one caught under the tube as he was wiggling around.

I called the nurse in to see what to do, and she gently pushed it back in. I was surprised that it didn't seem to bother him too much. Just the same, I'm glad they've taken it out now so he can't mess with it anymore.

This afternoon, they told me the lab work showed he had slightly elevated levels of two of the medicines, but that's normal for someone Garrett's size, so the specialists don't feel compelled to change the dosage. Nobody over here has said anything about when we'll be leaving, but if the lab work looked good enough and he's been slowly gaining weight, I would think they'd let us out of here soon.

PICU - Day 8

We arrived at the PICU last Sunday afternoon, and this Sunday afternoon we moved out to the Pediatric Inpatient unit. Other than the move, today was pretty quiet. Garrett's schedule was to eat, fill his diaper, sleep, and then repeat the process. I guess that's a fairly normal day for a baby.

He sure sleeps a lot, though. When we brought Jonathan home from the hospital, it seemed like he'd only take 20-minute naps here and there. Garrett just sleeps and sleeps and sleeps. I wonder if it's because his heart is still working overtime and wearing him out. He seems to be generally good-natured when he is awake, though.

He's also fussing longer when he's hungry, which I'm glad to see. Yesterday, when he would wake up hungry, he'd let out one cry, root around a little, and then just quit. I was concerned that he just didn't trust people to meet his needs anymore and wasn't going to keep trying. Of course, I don't think that thought process would be happening at a conscious level. They don't even understand cause and effect until ... I don't remember how many months ... but who knows what primal responses they might have to the type of trauma Garrett's experienced.

In my college psychology class, I remember learning about an experiment in which dogs were confined to a part of a room where they were electrocuted through the floor. They didn't have any way to escape the shocks, and eventually just cowered in a corner and endured it. The next part of the experiment was to then provide them with a way out, but the dogs didn't take it. They seemed to have accepted that they'd have to put up with the shocks, and didn't take any steps to remedy the problem once a solution was available.

Thank goodness that despite the amount of pain Garrett's been through already, he hasn't just accepted that that's the way life is -- at least not when it comes to him being hungry. (I've read that similar ordeals in preemies can actually change the way the brain develops, so I'm not worrying over nothing. And I read that before Garrett was even conceived, so I'm not out looking for things to worry about either.) Hopefully, with good attentiveness and responsiveness from Mom and Dad, he'll grow up with a healthy sense of security and belief that the world is a generally safe place.

But, back to today ... Garrett's UVC line (the one through his umbilical cord) came out this morning, and his arterial line (the one they drew blood from for lab work) was taken out early in the afternoon. All that's left are monitors for his heart rate, respiration and blood oxygen level, and the feeding tube. The doctors in the PICU thought we could pull the feeding tube (it hasn't been used in over a day anyway), but the Pediatric Inpatient folks wanted to be more conservative and leave it in just in case they might need it. He'll look so much healthier once that's out too.

Tomorrow should be a lot like today -- just feeding him and waiting around. They'll draw more blood for labs either tomorrow night or Tuesday morning, and if the results look good, we might get to go home before Thanksgiving! We'll see.

PICU - Day 7 - Update

I know it's been a while since the last update, but now that I can hold Garrett, I've discovered just how tricky it is to type with one hand -- especially if it's my left hand.

Anyway, yesterday we tried nursing for the first time since arriving at the PICU. I was wondering how Garret would do, since he hasn't had anything other than a breathing tube in his mouth since Sunday afternoon. At first, he kind of checked things out like this was familiar, but he wasn't quite sure what to do. That only lasted for a minute, though, before he latched on and started gulp, gulp, gulping like he's been nursing for weeks already.

He's continued to do well with nursing, and the doctors are all very pleased, as that is one of the key signs that he'll be able to do fine on his own when he goes home. One of my main jobs will be to make sure Garrett is growing and gaining weight. We need him to get bigger so he can better tolerate the next angiogram, whenever that will take place. Also, with the extra workload his heart has to endure, he's burning through calories much faster than usual, so we need to ensure his caloric intake can support those demands.

Last night, Garrett's nurse Meghan and I were changing his diaper after a feeding, and Meghan began adjusting how his catheter was affixed to his leg just as Dr. Arteaga came in. Dr. Arteaga said, "Oh, we don't need that anymore, do we?" Meghan replied, "I don't know. Do we? They want to watch his urine output, but we can weigh diapers instead." Dr. Arteaga thought that would be better, so the catheter came out and Garrett has one less thing to get tangled up in when moving from his bed to my lap and back. Woo-hoo!

We really like Dr. Arteaga. =)

Yesterday, they also talked about removing his UVC line (the one running into his umbilical cord through which he's receiving various medicines), but they'd need to replace it with another IV. I'm not sure why they want to take that one out if they need to put another one in instead, but when it came down to it, they couldn't get another line in anyway.

They had trouble finding viable options, since he's already been poked so much. Remember the ER team in Wabasha tried several times to place a line before resorting to going straight to his bone marrow in his right leg. The staff here tried three times (twice in his right foot and once in his left arm) when Dr. Arteaga came in to see how things were going. She told them to try one more time, since they thought they might have a shot in his left foot, but if that didn't work, they should quit poking at him and just wait until today.

Did I mention we really like Dr. Arteaga?

Recently, however, they decided to try giving him his medications orally, so they could skip adding another line. He seems to be handling that fine. He hasn't gagged or tried to spit it back out (although he grimaces to show he doesn't like the taste), so tomorrow they'll probably just take the UVC line out and call it good. It's too bad they couldn't have decided that before poking him four times and making him cry and squirm.

That's mostly it for today. His creatinine level is down to 0.6, just shy of normal, so his kidneys are still improving. And they're talking about moving us out of the ICU tomorrow! That's another big step to take before getting out of here and going home. It also means tonight will be my last night in a sleep room, but since Garrett is nursing exclusively now, it's probably just as well that I crash in his room anyway.

Here's hoping for more good news tomorrow.

PICU - Day 7 - Pictures and Video

The short summary for today is that Garrett just keeps getting better. I'll type up an actual post when my hands aren't half occupied with better things (i.e., holding Garrett), but in the mean time, here are some pictures and a video.

Garrett is slowly getting detached. His catheter was removed yesterday, and they plan on removing the feeding tube and UVC line (through the umbilical cord) tomorrow.

Now that Garrett gets to nurse, I get to see that serene, full-tummy contentment while he sleeps.

 Jean, Tom, Chris (Dad), Jerry, Steve and Jonathan have been frequent guests in the PICU waiting area. Today, Garrett's cousin, TyTy, came along too.

 

Garrett's color is looking better. He had a little bit of jaundice.

PICU - Day 6

I didn't get one of the sleep rooms on the floor last night, so I camped out in Garrett's room instead. Aside from his monitors beeping at first, it wasn't all too bad. 

It sounds like there's not too much excitement for today. At rounds, everyone said he's doing well, and his liver is getting back to the normal size. The neuro gals all oohed and ahhed over him and took their time to get their "cute baby fix."

Dr. Cloft confirmed that the plan right now is to get him ready to go home and try to wait five to six months before doing another round of embolizations. He mentioned that Garrett's pulse is a little more difficult to feel on his right leg, which they had used for his first angiogram, but he still has good circulation through the leg. It could be that his artery is just slowly recovering from the angiogram, since the tube that was used was about the same size as the artery (which is why it's so tough to work on someone as little as Garrett).

We'll get to try nursing as soon as another more critical case on the floor is addressed, and I think Garrett is eager for that. He's been trying to suck his fingers on his right hand -- but can't because of the IV there. (The white pad is just to help keep the IV in place.) He's still getting milk through the feeding tube though, so he shouldn't be starving.

PICU - Day 5 - Extubated!

Garrett is one week old today! His creatinine levels were down to 0.7 this morning -- so we're that much closer to the normal 0.2 to 0.5 range, indicating his kidneys are doing much better. During rounds, I talked to the neuro folks and was told Garrett wouldn't need to be on anti-seizure medication for the long-term. While he might be at increased risk for seizures, they believe there isn't any harm in eliminating the medication in children. He'll probably be on it until the vein of Galen malformation is resolved, but not forever, so that's good news too.

But best of all, Dr. Arteaga and I got our way and the breathing tube is out! They had to perform a bronchoscopy first to ensure the blood-tinged mucus he had in his lungs was due to a small scratch from the initial intubation versus some underlying problem. But that checked out and they removed the tube around 4:15.

Before that, though, Jean and Steve brought Jonathan to visit again. He enjoyed checking out the teddy bear and balloons Lake City Lumber sent to Garrett, hiding under a chair, and sipping from the big straw in Mom's cup.

And now that the tube is out, we don't need a nurse in here around the clock, so I can play my iTunes playlist of mellow music and sing along to Garrett without being self conscious.

They're going to keep him on breast milk through the feeding tube tonight, but I imagine I'll get to start nursing him again tomorrow. In the mean time, I've gotten to enjoy a few hours of holding him this evening.

Over the past few days, whenever I've been away from the public eye and thought about our limp little Garrett in the emergency room with everyone poking and prodding at him, and even intubating him, without any sedation or pain medication, it wouldn't take more than a second to feel a fresh burst of sobs erupting from what seems to be a bottomless pool of pain. Even though we're past that now, it'll be a while before the tangible despair and helplessness of those moments will fade.

That said, getting to hold him this evening and sing to him, I'm now fighting back a new swelling in my chest and tears of gratefulness. He looks so healthy and perfect now. We're not in the clear yet. In fact, when I asked Dr. O'Leary this morning how soon Garrett might get to go home, he said it's too early to tell (of course) and that we're really just on the front end of this thing.

But we're a long way from where we were Sunday, and considering we had to face a strong chance we'd lose our little guy, it just feels like such a blessing to get to cradle him in my arms and see him look comfortable and relaxed.

Just before extubation.

Right after extubation. He'll have a minimal amount of oxygen blown over his face tonight just to be on the safe side.

Garrett was pretty sleepy, but I think he enjoyed getting off the flat bed for a while and listening to Mom hum and sing -- even though I can't carry a tune.

Pictures

Here are some more pictures of Garrett. Just as a warning, I'm including some of the scary pictures of him hooked up to everything.

But first, here are some more from his first hours of life:

And here are some from the PICU:

Here Garrett is wearing a cap for his first EEG. He ditched the cap when the EEG was over, but everything else stayed -- monitors, IVs, breathing tube, catheter, eye goop. No parent wants to see their baby in this condition. Definitely the thing nightmares are made of.

Below are some pictures from Jonathan's visit Tuesday. At 18 months, he doesn't have any idea of what's going on. He's getting to spend a lot of time with Aunt Jean, who watches him during the week when Chris and I work, so it's close to the normal routine for him. The only difference is that he's not getting to see much of Mom. So far, he seems to be busy and distracted enough not to miss me too much.

After Jonathan's visit, the EEG was over, so the leads came off. That meant a lot of pulling on Garrett's little scalp to detach the wires, which he did not appreciate, but as the nurses tried to gently wash out the dried up glue gobs, he relaxed and enjoyed the head massage. Seeing how he responded to that, I've been rubbing his fuzzy little noggin a lot last night and this morning.

It's nice to seem him actually look somewhat peaceful, despite all of the contraptions he's hooked up to.

Unofficial Word on Extubation

Dr. Arteaga was just in to see how Garrett is doing. She seems about as eager as I am to get that breathing tube out. She consulted with the neuro folks this morning, and after looking at Garrett and seeing how much he's moving around, and that his liver is somewhat smaller than yesterday (although still larger than they'd like it to be) it sounds like we'll be working toward extubation today. It's not a sure thing yet, as she wants to talk to the neuro doctors some more, but hopefully he'll have the tube out soon.

PICU - Day 4

Today is pretty much a wait and watch day for Garrett. The EEG detected two subclinical seizures early yesterday evening, but it sounds like they are not necessarily concerned about that. Given the timing, I'm guessing they think the anti-seizure medication hadn't taken full effect yet. The nurse said he'd still be on the anti-seizure medication for "some time," which sounds as though it wouldn't be a life-long thing. I'll have to ask the neuro folks the next time I see them.

They were hoping to extubate him this morning, but he was much less active after the MRI than before it and they were concerned about that. He hadn't been given any sedation medication since the MRI, so they didn't expect him to be so "floppy." As they examined him more, they noted that his pupils were still pretty small and the kidneys (or liver -- I don't remember which) were still slow in flushing stuff out of his system, so they suspected maybe the sedation medication was still in his system and that was behind his lack of activity. Better that than some neurological problem. But they want to watch and make sure that's the reason before taking the breathing tube out. (He's essentially breathing on his own now with just a little boost of pressure from the ventilator when he inhales. Other than that, it's set to breathe at a given rate if Garrett doesn't take his own breaths, but he's been breathing way over the tube rate, so that's looking good.)

Since then, his nurse, Jeannie, and I have actually seen him moving around quite a bit. When they took the EEG leads out, he started squirming like crazy and opened his eyes as if to say, "What do you think you're doing?!" We don't like him to be uncomfortable, but it's good to see him respond. He got a nice scalp massage afterward as we tried to get most of the glue out of his hair, and he seemed to enjoy that.

When Dr. Cramer came by this morning, he said Garrett's creatinine levels show his kidneys are still improving. They're not quite where they should be, but the levels are moving in the right direction and he seems comfortable with the progress. He even said we probably won't see him anymore. Garrett's highest creatinine levels were 2.0, whereas 0.2 to 0.5 is considered normal for infants. This morning, they were at 1.0, so we're getting there.

His liver has apparently enlarged some since yesterday, as it's trying to work out some extra fluid remaining in his body. They've given him some diuretics to help him get rid of the fluid, but due to that uncertainty, the ventilation tube will have to stay in for sure until tomorrow. Essentially, if the diuretics removing the excess fluid doesn't help the liver shrink, that's an indication that the heart is still working too hard and he would probably need another angiogram to embolize additional feeders. I'm really hoping things look good enough to extubate -- obviously because we want Garrett to get bigger before another embolizm, but also because I'm getting very antsy to hold the little guy again. I've given him little massages and whatnot, but I haven't held the pumpkin since Sunday afternoon.

PICU - Day 3

This morning, the doctors seemed impressed with just how well Garrett is doing. Obviously, we're not in the clear yet, they're still watching his kidneys and liver, and monitoring how his heart and lungs are responding to the embolization. But it's encouraging just the same.

An EEG and MRI were done this afternoon. It sounds like any time there is a procedure done to treat something in the brain, there's a chance for subclinical seizure (a seizure in which an EEG will show abnormal brain activity, but which does not present any noticeable clinical signs or symptoms). They did find one subclinical seizure in the 30-minute window they were looking at, so they gave him some anti-seizure medication and will be monitoring him with an EEG overnight to see if he has any more. The neurologist indicated anyone who has a subclinical seizure is at greater risk for seizures throughout life. 

I keep hoping that, with as young as Garrett is, he'll recover from all of this and his body will get right back on track with the type of development he'd experience if he hadn't had any problems ...

I don't expect to hear the results of the MRI until tomorrow. If everything looks good, they'll extubate him and we can begin working on nursing (which means I can hold him!). After the MRI, they began giving him breast milk through a feeding tube, and he appears to be tolerating that well.


 

Angiogram and Embolisms

Things went very well with the angiogram. Since they could only use about 10 percent of the dye that they would normally like, they couldn't see all of the arteries that were shunting to the vein, but Dr. Cloft said he found three very large ones and was able to address those. He suspects those three could account for 50 percent of the excess blood flow, so we're hoping to see Garrett improving over the next couple of days. His "numbers" (whatever numbers they're watching) are already looking much better. They even measured his head circumference before and after the surgery, and it was reduced a whole centimeter, which means the pressure from the extra blood flow has come down a lot already. 

Dr. Cloft had wanted to go through the umbilical cord, versus the leg for the angiogram, but that ultimately didn't work. He said once they were in through the leg, though, it was pretty easy to get up to the brain. He sounded awfully stressed when he talked to us following the angiogram. It seemed like nothing but good news, but I'm sure it takes a lot out of a person to have to do such delicate, critical work on such a little baby. 

When I asked whether they ran into trouble with any of the risky stuff they were worried about, he said they got through it all right, and added that he doesn't like to worry parents ahead of time by explaining too much about what the risks are with ruptured arteries. He didn't know we had already heard enough to be plenty worried.

So the super-scary part with the angiogram is over. If things improve enough over the next couple of days, they'll wean him from the ventilator and work toward sending him home. Then when he gets bigger (six months, maybe?) they can do the same thing with much less risk and hopefully address the remaining arteries. 

We very much appreciate everyone's continued thoughts and prayers during this time.

Garrett Update

When we arrived this morning, Garrett looked better than when we left last night. Apparently, in the time we were gone, they discovered what they think is the source of the problem. Someone had listened to Garrett's fontanelle (a soft spot on his head) and heard a bruit. That indicated something was wrong with the circulatory system in the brain, because you are not supposed to hear the whooshing of blood there. 

When they performed an ultrasound of Garrett's brain, they found a vein that was larger than it should be. The first doctor who told us about it said that in the scheme of things, it's not the worst diagnosis, since it's treatable, so our impression was that this was abnormal, but not terrible news. When the neurosurgeon came in to explain things, however, it sounded much more grim.  

Dr. Wetjen said Garrett has a vein of Galen malformation. It's very rare and very serious. It's treatable, but there are risks with the treatment because it requires doing an angiogram to embolize the arteries -- essentially closing them off with a "super glue" to divert the blood flow elsewhere.

Since Garrett is so small, it makes the procedure very difficult and puts his kidneys at risk from the contrast dye they need to use. His legs and brain are also at risk if the angiogram ruptures his arteries. It sounds like there are other risks, but my brain dropped to about 10 percent functionality when I heard "high mortality rate" -- and that's in the process of treatment. Not treating it pretty much guarantees heart failure and death, so that's not an option. 

What little bit of me can look out beyond today and tomorrow might think about the scenario of treatment going very well and things being "normal." That's possible, and that's what we're praying for, but it feels like the emphasis here is on prayer as the risks seem awfully, awfully high. It sounds like they'll perform the angiogram later today.  

Right now they’re giving Garrett saline to improve his coagulation. He's apparently bumped two other patients for the angiogram this afternoon, so they're doing what they can to take care of this as quickly as possible. One complication is that with what he's been through, his kidneys already aren't performing as they should be, and the dye they need to use for the angiogram will put an extra strain on them, so they're trying to get his kidneys to improve before the angiogram as well. The tone from the doctors makes it sound like they are trying and hoping for the best, but the confidence level I hear in their voices isn't very comforting.

Baby Garrett News

Garrett Michael Klein was born Thursday, November 12 at 7 pounds, 19.5 inches long. He was healthy and beautiful with dark hair like his mom and a hint of brown around his pupils, making us guess that he'll have more of my coloring instead of Chris and Jonathan's blond hair and blue eyes. He even seemed like a good little eater from the start. Maybe that's just easier the second time around.

 

He had good Apgar scores of 9 and 10, and the hospital stay was uneventful (he had what sounded to us like odd breathing intermittently, but nothing the care providers seemed concerned about), and we went home Saturday afternoon. Later Saturday, Grandma Pam thought his breathing seemed rapid, but as we watched it, it appeared to even out. By 4 a.m. Sunday morning, however, we'd seen enough throughout the night that we brought him into the ER in Wabasha to be evaluated.

The ER doctor, Dr. Baines, said his color, muscle tone, reflexes, etc., all looked good and that his respirations were within the normal range. He ordered a chest X-ray to check out his lungs just to be on the safe side, and even had a radiologist look at it, but they thought that looked fine as well. We got home around 6 a.m., fed Garrett and tried to get a little more sleep. After 7, he seemed to fuss as you would expect any newborn to on his first morning home. Chris calmed him down a few times, and by 8:15, I figured he probably wanted to eat again, but he wouldn't eat.

His breathing still sounded odd to us, but we had just been to the ER and were reassured that he looked good and the breathing abnormalities were probably due to some amniotic fluid still getting worked out of the lungs. With the odd breathing, it almost sounded like he wanted to burp, and I wondered if he wasn't eating due to that. Although I managed to get a couple burps out, there wasn't very much. I kept trying to feed him throughout the morning, more persistently as time went on, but he just wasn't interested. He seemed to gradually become more lethargic, too, but it was hard to know whether he might just be tired from me pestering him to eat so much. By 12:45, I called the nurses station in Wabasha for advice and they said to bring him into the ER again.

Dr. Baines was still there, and he was alarmed at the change in Garrett's color and responsiveness since just that morning. A whole team of people quickly descended on our three-day-old son and started drawing blood, hooking up wires and monitors, placing an air mask, and trying to place an IV, without success, and resorting to drilling a hole into his bone marrow to administer emergency fluids. Little Garrett, pulling at the air mask, was too weak and dehydrated to even cry, but still squeaked his objections with each breath -- at which point my own senses started shutting down and it seemed my spirit jumped ship and left my body.

We don't understand how he could have appeared fine just hours earlier that morning. (He probably wasn't fine, but how could the care providers at the hospital before discharge and in the ER miss whatever this was?) They weren't sure now whether it might be an infection or possibly improper closing of the heart valves, but it was serious and they had him airlifted to Saint Marys' PICU. We found rides and took off right away, knowing that Mayo One typically beats folks back to Rochester, but we actually got there just before them, as they had taken some time to stabilize Garrett in Wabasha before lifting off again -- including placing him on a ventillator, most likely without sedation or anything for the pain before intubating him because his condition was so critical.

At the PICU, they first ruled out heart valves being the problem and are now working on determining whether an infection or metabolic disorder needs to be treated. In case it is an infection, he's already on antibiotics, but he'll still be in the PICU for at least a few days. We came home last night to try to get some sleep and pack some things before heading in again this morning. Grandma Pam is going to help with Jonathan today, so we can spend some time with him as well, as I haven't seen much of him since Garrett was born. Then Chris will probably try to keep some normalcy with Jonathan at home while I stay in Rochester with Garrett.

I'm not sure what the best case scenario is right now. It sounds like an infection would be the most straightforward to treat. With whatever was going on (I don't understand most of it -- blood sugar was critically low, electrolytes are off, blood is acidic ...) Chris and I are concerned about any long-term health consequences he might have to deal with, even when the source is treated. One of the doctors in the PICU said babies this young have so much "development pending" that they can bounce back as if nothing ever happened. Obviously, there are no guarantees, but that's what we're praying for.

I'll post updates when we have them. In the mean time, any prayers that could be sent our way would be much appreciated.