Dec. 31 - New Year's Eve

Last Tuesday, Jonathan visited his aunt Jean while I headed to Rochester to do some shopping and run some errands. (Thanks, Jean! I needed the break and I think Jonathan missed you, too.) I had to stop at the bank, return some shoes and find some slacks that fit, since I'm still carrying around 15 more pounds than when Garrett was conceived. I plan on returning to work next week, and I don't want to lose circulation to my lower half when I button my pants.

Saying goodbye to Jonathan, I started looking forward to the 45-minute drive to and from Rochester by myself. Ah, some real alone time. I could listen to my music (versus a Fisher Price Little People movie or Baby Signing Time) and sing along wholeheartedly. I think I replayed Evanescence's My Immortal about five times in a row, determined to sing it through without choking up.

"When you cried, I'd wipe away all of your tears
When you'd scream, I'd fight away all of your fears
And I held your hand through all of these years ..."

Well, we didn't have years ... and I only saw Garrett with tears once -- a memory that still gnaws at me. A few hours before he died, he was trying to move his right leg a little when I noticed his unblinking eyes were getting pretty moist. He had been given drugs to essentially paralyze him for his procedure, so Dr. Arteaga wanted the neurosurgeons to see this movement.

I asked her if his eyes were just watering, since I hadn't seen him produce tears yet and I didn't want to think that he was actually in pain now. But Dr. Arteaga said sympathetically that he was crying. What?! He's paralyzed and can't tell us he's hurting and he's crying?! I know they watch the heart rate and other things as indicators of pain, but the tears were indication enough for me.

I think Dr. Arteaga saw my own pain as I wiped the tear that was about to spill onto his cheek. She told the nurse to give him another half dose of fentanyl, but repeated that she really wanted the neurosurgeons to see that he was trying to move. After Garrett died, we heard assurances from more than one person that he hadn't suffered, as he had been well medicated during the procedure and afterward. But I saw tears. How much pain would he have had to be in to shed tears? How long? Ugh.

Earlier, while he was recovering on the general floor or at home with us, I had more occasions to fight away all of his fears -- although my utter inability to help while he suffered in the emergency room in Wabasha still haunts me. But when Garrett objected to having his diaper changed, which was the only time I'd hear an all-out cry, I'd hum a low mmmmmm as I pressed my lips to his forehead, and he'd quiet almost immediately. And when he'd fuss in the middle of the night, he'd usually calm down before I even got to him. Just hearing my voice as I approached was enough of a comfort. Being so young, could he have possibly known how much I loved him?

But back to shopping ... While I was at Target, I wanted to check out the Christmas items that were now on sale. Along with ornaments and holiday tableware, there were cute fleece hats made to look like smiling snowmen with "Baby's First Christmas" in blue letters across their bellies. I actually didn't get as emotional as I would have expected. I just felt a tug on my heart -- just a wish that I could have gotten one.

It's funny, we never bought a "baby's first" anything for Jonathan. I think we were just so busy being new parents and keeping up with diaper changes, feedings and spending quality time with him that purchasing such keepsakes wasn't high on our priority list. Assuming Chris and I will be blessed with another little angel some day, we'll probably meet those firsts with a touch more tenderness and celebration.

Later on at the mall, I worked through trying on an armload of sweaters in one of Macy's fitting rooms and discovered where those extra 15 pounds have been residing. You can never get a really good look at your own back side by turning to peer into a mirror, but when a dressing room offers two mirrors, you can easily look in one and see your reflection in the other -- and then pick your jaw up off the floor because that is not the shape you had the last time you were there. Holy smoke! I guess I need to start working out more diligently.

Although I wasn't pleased with the discovery, I was glad to have had a reaction. The day after Garrett passed away, it was hard to feel much of anything except the sense of loss. I looked about as ruined as I felt and I didn't care. The laundry was piling up and I didn't care. We had paperwork to tend to and I didn't care. I didn't feel anything at all. I acknowledged the flab above my C-section scar and wondered without caring whether my empty womb was still shrinking. Does such grief give a person cart blanch for apathy the rest of her life? Would I be 58 and have a bad hair day and think, "I don't care. My baby died!"?

I didn't really expect the overall lack of concern to last forever, but it felt like it would at the time. So being slightly dismayed at the sight of thicker thighs and a fuller derriere felt like ... well, progress, I guess.

Now 2009 is coming to an end and I'm eager to put this year behind me. Here's hoping for a much better 2010!

Dec. 29 - Jonathan Clips

Every day, Jonathan gives us something to laugh about. He's not normally such a messy eater.



Jonathan knows what the kitchen is, but he calls it the "tchiken." It wasn't easy to get on video, though.

Dec. 28 - Till We Have Faces

One of my favorite books is C.S. Lewis's Till We Have Faces, which is a modified version of the myth of Cupid and Psyche. Unlike the traditional mythological story, however, the protagonist here is Psyche's sister, Orual, who is terribly ugly and eventually begins wearing a veil to hide her face.

Orual loves Psyche as if she were her own child, and when the gods destroy their relationship and send Psyche into exile, Orual essentially shakes her fists at them and demands some answers. But the gods don't answer, and Orual concludes that they are mean, tortuous beings. As she nears the end of her life, she documents her story so it can live on and readers can judge for themselves whether the gods are just.

Some time after completing her story, Orual has a vision in which she is given the opportunity to make her accusations against the gods. She has her manuscript with her and reads it over and over again before them, until she is interrupted -- at which point she begins to understand, among other things, that stating her objections was itself the answer. And here's the part that still gives me goosebumps:

The complaint was the answer. To have heard myself making it was to be answered. Lightly men talk of saying what they mean. Often when he was teaching me to write in Greek the Fox would say, "Child, to say the very thing you really mean, the whole of it, nothing more or less or other than what you really mean; that's the whole art and joy of words." A glib saying.

When the time comes to you at which you will be forced at last to utter the speech which has lain at the center of your soul for years, which you have, all that time, idiot-like, been saying over and over, you'll not talk about the joy of words. I saw well why the gods do not speak to us openly, nor let us answer. Till that word can be dug out of us, why should they hear the babble that we think we mean? How can they meet us face to face till we have faces?

Why, indeed, should they hear the babble we think we mean? But also, why is it sometimes so difficult to know what we really do mean?

Like Orual reading her life's story, I find myself reading my own blog posts again and again ... and again and again and again. I'm not really sure why. I don't feel a complaint against God building up. Maybe it just helps in trying to get past my own babble (which is probably all that comes out when I talk to people) to uncover what's stewing at the center of my soul.

I don't know whether anyone is still checking this blog, since it began as a way to provide updates about Garrett's VOGM treatment, and that story has now sadly ended, but I'm finding it's still useful for sorting out my own thoughts in the wake of his death. I just feel a need to write everything down -- fill in the blanks from his last day here, record random thoughts and memories, try to determine what I really make of all this. And while that focus on Garrett's life is therapeutic, so is including other day-to-day observations, like Jonathan thinking the word "Acapulco" is hysterical, or appreciating how Chris consistently makes better scrambled eggs than I do.

There is still life after death. Now I'm just trying to figure it out.

Dec. 26 - Merry Christmas

Merry Christmas -- a day late.

I think everyone expected us to have a rough time with Christmas this year, but we managed all right. We were supposed to go up to my mom's in Ramsey, but decided it would be best not to push our luck on the icy roads. That's par for the course for our holidays this year, though. We already missed Thanksgiving with the Kleins and Christmas at my dad's on the 12th. At this rate, I wouldn't be surprised if we were all sick and had to miss the Klein Christmas next weekend, too.

Once Jonathan woke up from his nap, we headed down the road to spend the rest of the day at Chris' parents' house. We got there in time to watch the second half of "A Christmas Story," and afterward enjoyed some turkey and stuffing, green beans, cooked carrots, and mashed potatoes (of which Jonathan had three helpings -- "more tatoes"). It wasn't the normal hustle and bustle of Christmas, but it was a good time with family just the same.

Jonathan thought it was his job to keep tabs on people that evening, too. We weren't a large group (Grandma, Grandpa and uncles Tom, Jerry and Pete in addition to Jonathan, Chris and myself), but if someone left the family room, Jonathan would put his hands up and ask, "Where Uncle Jerry go?" or "Where Ganpa go?" etc.

I think the main reason it wasn't too depressing is that we hadn't thought much about the holidays with all the chaos since Garrett was born. We hadn't done any Christmas shopping, so we didn't have any presents for Garrett to make his absence more poingnant. And I hadn't played out the family gatherings in my mind -- with the exception of the Rossing Christmas, simply because that date was approaching when Garrett had seemed so healthy. I had been looking forward to introducing Garrett to great grandma Rossing, my uncle Mike and Renita, and other family members who hadn't met him yet. But that get-together came and went the day after Garrett died, so we were in full grieving mode then anyway.

If I had already thought about a happy Christmas day as a family of four, this would have obviously fallen short and been overshadowed by the sense of loss. I guess being too busy to set many expectations was a blessing.

Dec. 21

Yesterday, Jonathan sat quietly in his "thinking chair" (his foam Cars chair, which is red just like Steve's thinking chair on Blue's Clues) while Chris watched part of a football game. Jonathan actually fell asleep in that chair and wouldn't let Chris move him to his crib to enjoy his nap more comfortably, so Chris propped some pillows around him and pulled an afghan over his legs.

With Jonathan sleeping, we cleared the kitchen table and began going through the box of cards from the visitation and service. Some held particularly touching messages, and I would know one was coming if Chris sighed or grabbed a tissue in the middle of reading it. One note summed up the situation succinctly with, "This definitely sucks!" (Thanks, Mike. I needed the chuckle.)

Jonathan woke up not long after we finished, and he was pink from head to toe. We thought he might have simply been too warm under the blanket, but he was just as much a furnace ten minutes later. Poor pumpkin. Tylenol helped to keep his temperature in the low-grade fever range, and he was acting mostly like himself throughout the rest of the day, but with less energy. He did throw up once, though. Thankfully, Chris' brother Jerry, who was visiting us that afternoon, noticed that Jonathan looked like he was about to vomit, so Chris picked him up to take him to the bathroom. He had just stepped off the carpet and onto the linoleum when Jonathan lost his lunch -- mostly all over Chris, but partially on the floor and a little on himself.

That's the first time he's thrown up due to some illness. His first response was to look at the mess on the floor and say "Spill!" Well, he hasn't mastered the "sp" sound yet, so it was really more like "Bill!" But then he started to whimper, as he didn't understand what had just happened. Once we got him cleaned up, though, he was fine.

It might have been just the power of suggestion, but Chris and I were starting to feel slightly under the weather, too. As we headed to bed, I asked Chris if he still planned on going back to work today. He was, so I fumbled to set the alarm and saw the last set time was 3:40 a.m. What?! 3:40? Why on earth would it be set that early? Oh ... right. The last time we had set the alarm was for the morning of Garrett's last procedure. I wanted to be sure he had a chance to eat before he had to begin fasting at 4. That was the last time I nursed him.

Ugh. That one hurt.

Dec. 20 - Slide Show

Well, Chris and I made it through Garrett's visitation and memorial service better than I expected. I think the experience was just so foreign to us that it felt as if it was someone else's son we were mourning. Could it be we were just standing in for another couple? Unfortunately, no, but when you're placed in such a surreal situation, it really doesn't seem like it's happening to you.

I might have a longer post later, but for now, I just wanted to share the slide show from the service for those who couldn't be there.

Garrett's Story

For those who weren't aware of Garrett's story to follow along as it unfolded, here's the short version.

Garrett Michael Klein was born Thursday, November 12th at St. Elizabeth's Hospital in Wabasha. He was 7 pounds and 19.5 inches long with good Apgar scores of 9 and 10. The hospital stay, like the pregnancy, was rather uneventful and we went home Saturday afternoon. Early Sunday morning, we brought Garrett to the Wabasha ER with concerns about how fast he was breathing. After the doctor checked him out and had a chest X-ray taken, he said Garrett was fine and we went home. Later in the morning, however, Garrett quit eating and slowly became more lethargic, so we brought him back to the ER again. He was in much worse shape than we realized and was airlifted to Saint Marys' PICU. (Read more about Garrett's first few days and the ER ordeal.)

In the PICU Monday morning, we learned that Garrett had been suffering respiratory distress and congestive heart failure as a result of a vein of Galen malformation -- a condition in which some arteries in the brain flow directly to the vein of Galen without being slowed down by capillaries. This overwhelms the heart, and consequently the lungs and other organs. The condition is very rare and very serious. It affects about 30 people in the US and 400 people worldwide. Although they know that it forms between the 6th and 11th weeks of gestation, the cause is unknown, but research indicates it is not a hereditary condition.

Garrett was scheduled to have some of the arteries embolized that afternoon. In someone as small as Garrett, the surgery is risky and has a high mortality rate. As parents, we could hardly process the news that there was a very real chance we'd lose the little boy we had just welcomed into our lives. But the doctors explained that he would certainly die if the malformation wasn't treated, so we didn't really have an option.

He made it through the surgery, however, and seemed to do even better than the doctors expected over the following days. The surgeons explained that he would need additional embolizations in the future, though. Trying to treat this in a newborn is very difficult, and they could only emoblize a few of the arteries to reduce the excess blood flow. The goal was to wait until he was six months or older before emoblizing more arteries, so he would be bigger and the procedure wouldn't be so risky. In the mean time, he'd be on a variety of medications to help manage the extra strain on his heart.

But, as I said, he was improving well and by Tuesday the 24th, it sounded like we'd be heading home the following day. That same morning, however, some doctors observed Garrett breathing somewhat faster and ordered an echocardiogram to take another look at his heart. They felt it still had too much of a workload and he would need more embolizations the next day. (Eek!)

Our little fighter made it through that procedure as well, and on December 1st, we happily brought Garrett home with dramatically fewer medications. He seemed to be doing wonderfully -- eating well and spending a little more time awake and alert each day.

We expected nothing but good news at his followup appointments December 10th, but while his heart and the malformation itself appeared to be getting smaller (both very good signs), the ventricles of cerebrospinal fluid in his brain were enlarging. With that, Garrett wouldn't be able to wait until he was six months old before undergoing another procedure. He was scheduled for surgery as the first case the next morning, but this time the doctors would use coils to block all the remaining arteries and anticipate that this would be the last treatment needed for the malformation.

Once again, Garrett made it through the procedure like a trooper, but there were complications following the surgery. When the coils clotted over and the excess blood flow had nowhere else to go, some arteries ruptured and the doctors had trouble getting the bleeding under control. Then Garrett's heart began having trouble pumping blood with enough force.

The staff worked continuously to bring Garrett back, but eventually it became clear that his brain had suffered too long without oxygen. By that point, even if they could get his heart pumping sufficiently again, he was essentially already gone. When the time came, we chose to remove the medical aides and hold Garrett once more as we said our final goodbye.

Dec. 16

Yesterday was Chris' birthday. I wasn't sure whether I should say "happy birthday," so I just pointed out, "It's your birthday today," and he nodded in acknowledgment. It's odd going through the mail and finding sympathy cards mixed in with holiday and birthday cards.

The last of Garrett's clothes have now made it through the wash: a onesie that said "Feed me or nobody sleeps," which really wasn't true to his quiet nature; another that read "I love hugs," which was more accurate; and a blue and white striped sleeper with "Daddy's little helper" in red letters around a blue tow truck. I didn't cry over handling them this time, but caressed the fabric once more as I put the pieces away ... Well, as I put the them in a bag in the crib we still need to take down. We haven't really figured out where "away" is yet.

Memories of Garrett still pop up in other unexpected places. We made French toast this morning, and as I measured out a quarter teaspoon of vanilla, I thought about how many times that particular spoon had been used in the last week of Garrett's life. He had done so well with his formula-fortified bottles in the end. At times, he'd finish two ounces and still want more. Everything seemed to be indicating he was getting better ...

Yesterday we dropped off Jonathan at Jean's to run some errands in Rochester, and as we drove to her house, I reclined my seat to a more natural angle. For a split second I wondered why it was so erect in the first place, and I then remembered it had been to avoid hitting Garrett's seat behind it. And when we stopped to fuel up at Kwik Trip on the south side of Lake City, I realized the last time we filled the van was at the same station the morning of Garrett's follow-up appointments. At the time, I had thought again how nice it was to travel with a baby who was so content to ride in the car seat.

One of the items on the to-do list yesterday was for me to get my hair cut. I'd been letting it grow extra long so I could lop off ten inches for Locks of Love and still have enough left to twirl into a quick bun without needing clips or pins to keep it in place. I thought about cutting it before Garrett was born, but remembered that the last time I donated to Locks of Love, I wound up with shorter hair than I expected and I didn't want to risk having inadequate length when I'd be hurrying to his bassinet to feed him in the middle of the night. Sure, there are other low-maintenance alternatives, but I didn't want my hair down when nursing and I didn't want to depend on hair binders or other devices to keep it out of my face (because I'd probably forget them on the bathroom counter), so I just kept the messy-bun option.

Now that I won't be getting up with Garrett multiple times a night, or worrying about little hands getting tangled in a ponytail, it doesn't really matter. It turns out there actually wasn't enough left to tie into a bun this time either. Oh well.

It's anyone's guess as to how I'll react when faced with these surprise memories. They might be met with a simple huh. I know it should hurt -- like the brief moment when you see your own palm graze the edge of a hot frying pan and you know you'll wind up with a burn, but the pain signal hasn't made it to your brain yet. Or maybe the burn has already done its damage, because there's just that numbness ... some of the time. Other times, I'll be listening to a song or thinking about some events at the hospital and expect that same numbness, since I've heard those same lyrics or relived those given hours numerous times already. And yet that's when the beast of grief awakens and tears into my heart again.

I don't know what the coming days will be like. I seem to do pretty well when I'm around other people, so maybe I'll hold up all right through the visitation and service. Then again, that's not the case if the other people are emotional, so probably not.

Dec. 15 - "Held"

The morning after Garrett passed away, I pulled up a sermon that I'd heard before from Greg Boyd, senior pastor of Woodland Hills Church. I've been following Boyd's podcast for a while now -- although I fell pretty far behind while on maternity leave with Jonathan. When I started catching up again, I heard this Held sermon, and it made me cry then, even before I had this degree of personal experience to tie to it. So Chris and I watched it over breakfast, and although our grief was still bitterly fresh, it was a salve on our wounds. 

This really gets at how I'm able to cope right now. I'm not asking why this happened. There is no why.

I was going to wait to share the sermon until I could wrap it in more of our context, but after talking with my stepmom this morning, who's having a tough day with it really sinking in that her grandson is gone, I thought I better just put the links out there and hope other people can find some comfort in the message, too. It's about 40 minutes long, but well worth the listen.

Audio - 4.77 mb
High-Quality Audio - 18.8 mb
QuickTime Video (mp4) - 123.2 mb
Windows Media Video (wmv) - 74.4 mb

Visitation and Service

A memorial service for Garrett will be held Saturday, December 19 at 2 p.m. at First Lutheran Church in Lake City. Visitation will be Friday, December 18 from 5 to 7 p.m. and one hour prior to the service at the church.

Clarification

I know I said I didn't want to hear certain typical words of comfort, but I should clarify that doesn't mean we don't want to hear anything. Although people's comments won't take away the pain, we do find some comfort in seeing them and knowing that we're not walking through this ordeal alone.(So go ahead and comment. Even if you've been checking the blog but have never met our family, just knowing that others care helps.)

I've heard that one of the general differences between men and women is that when there's a problem, men want to fix it and women just want to vent and be heard. I'm every bit that cliche woman right now. I know we'll get through this, but right now I'm not looking for solutions (there really is no fixing it, after all) -- just empathy.

Dec. 12 - The Day After

Song of the day: Broken by Seether (featuring Amy Lee)

"Broken" just about sums up how Chris and I feel this morning. Jonathan stayed over at Jean and Steve's last night (he was already asleep when they came to see us at the hospital, and we didn't get home until nearly midnight anyway), so Chris and I were able to have some time alone to begin dealing with our loss.

It's going to take a while before my mind really adjusts to the fact that Garrett isn't with us anymore. Leaving Saint Marys last night, it was strange to watch Chris pushing the stroller with only my purse and the diaper bag inside, instead of holding our little angel. Just the same, when we stepped off the elevator and my mind wandered briefly to think about loading up the van, it felt like we were missing something. I thought, "Wait, what about Garr ... oh." It'll be some time before my autopilot registers that he's no longer here.

That was evident this morning, too, as I washed my hair and thought about what I would wear today -- wondering whether any of my nursing bras were still clean and which tank top I'd wear with which T-shirt. For the last month, I'd chosen my outfits based on what was easy to nurse or pump in. My heart sank again as I remembered why it doesn't matter now.

The space on the kitchen counter I dedicated to Garrett's things (a container for his pacifiers; the notebook to track his feedings; an organized bin for his medicine, pill cutter, droppers, etc.) isn't needed anymore either. I guess I'll need to find a home for these things or toss them.

I wonder if there's a term for the opposite of nesting. As Garrett's arrival was approaching, I was eager to get his crib set up, his clothes out, his car seat installed ... Now that he's gone, I want to put everything away so the reminders don't evoke a fresh stab of pain.

So I put the newborn onesies and sleepers in the wash ... cried a little. Unpacked Garrett's bag and put the tiny diapers back in the package. Dumped out the expressed milk we brought to the hospital and wondered what to do with the formula he won't need now. Sobbed a little more. We still need to take his crib down, put the pack'n'play away, take the car seat bases out of the van and car, and find a place to store the double stroller we never used.

Maybe it's better that I hadn't gotten a chance to put a birth announcement together. I was hoping to send out Christmas cards this year, but that just doesn't seem right anymore. Our home isn't very big, but it's surprising how empty it can suddenly feel.

Before Surgery

Garrett was such a cuddler. He seemed to enjoy being hugged against my chest just as much as I enjoyed hugging him, and as I would carefully draw his head near, he usually turned it to nestle into my neck. In the last couple of days, he'd even hold his head up sometimes and begin to root toward my cheek. I told Chris it was almost like he was giving me little kisses.

Garrett usually wasn't really awake until late morning. Looking back, I feel pretty lucky that he was up so early (just after 6 a.m.) as we waited to be called for his surgery.

After Surgery

After hours of trying to save Garrett, the doctors conceded that there was really no hope of getting him back. He was given a final dose of fentanyl for pain and disconnected from all the medical devices. We held him as his heartbeat grew more faint and he slowly slipped away.

Looking down at him, I once more studied his little face and body -- seeing my own hairline, my nose, my chin, my wrists and hands, my fingers ... all in miniature. He had looked and acted so healthy before the surgery. It didn't seem possible he could really be breathing his last breaths now.

That morning, I had commented to Chris that the color of Garrett's eyes seemed a little lighter. Maybe they would turn blue after all. Now we'll never know.

Dec. 12 - Videos

Here are all the videos we have of Garrett.

11/19/2009 - Garrett had a breathing tube in the first five days of his PICU stay, which meant we couldn't hold him. All we could do during that time was touch him and talk to him as he lay in his bed hooked up to all kinds of medical contraptions.



11/20/2009 - Garrett was still puffy and jaundice the morning after his extubation since his kidneys still weren't functioning very well.



11/21/2009 - This is a video we already posted, but it's one of my favorites as it captures a few smiles.



11/30/2009 - Garrett slept peacefully (as usual) the day before we left Saint Marys.



12/08/2009 - Garrett generally seemed pretty content anywhere -- in our arms, in his chair, having tummy time on the floor watching Jonathan. He seemed to especially like watching Jonathan.



12/09/2009 - Every day, Garrett seemed to spend a little more time awake and alert.



12/11/2009 - Garrett wasn't usually awake so early in the morning, but we were lucky to enjoy a couple of hours visiting with him while we waited before his final procedure. This was the last time we held him before he was sedated.

Dec. 11 - Outcome

Final song of the day: The Boy's Gone (Home) by Jason Mraz

The long and short of it is that our little guy was a fighter, but he didn't make it. The procedure seemed to have gone well at first, but with the excess blood flow not having anywhere to go when the coils clotted over, some arteries ruptured and hours of trying to control the bleeding ensued. In the end, his brain went without oxygen for so long from the bleeding that even if they could get his heart back to pumping sufficiently, he was essentially already gone.

That's about all I can say right now. I don't want to hear any quaint comforts tonight. I don't want to hear that it will all be all right, or that God doesn't give you more than you can handle (obviously Garrett got more than he could handle, because he's not with us anymore), or that this is all part of some bigger plan.

I'm sure I'll have a cathartic, trying-to-process-it-all post later. I just don't have anything left right now.

Dec. 11 - Waiting

Song of the day (or morning, at least): Quiet by John Mayer "... and somehow I can't seem to find the quiet inside my mind ..."

It almost seemed like Garrett knew he wouldn't get to eat past 4 this morning, because he was up all night wanting to nurse more. So much for trying to get some sleep. Oh well. I won't complain about the time I got to spend cuddling the little guy, knowing he was just hours away from going through his third, and hopefully final, procedure to treat the vein of Galen malformation.

We got to the admissions desk at Saint Marys right at 6 a.m., and then it was a lot of waiting around with a little bit of talking to different folks mixed in. They said they'd take Garrett for surgery at 7:45, but we didn't hand him off to the anesthesiologists until 8:30. Now it's back to waiting.

Dr. Cloft said he thought it would take three or four hours. The risks are about the same as before -- maybe a little less since they know what they're dealing with. He said he'd still like to go through the femoral artery in the groin, but because Garrett has had two angiograms already, that might not be an option. The backup plan would then be to go through the soft spot in the back of the head. (Eek!) He made it sound like the risk involved with that isn't much different than going through the femoral artery, but somehow that's hard to imagine.

This procedure will be different than the previous two in that they won't be closing individual arteries with "medical grade super glue." Instead, they'll be going into the vein and adding coils to clot off the remaining arteries.

Chris and I were a little concerned about that, as some of what we've read online indicated using coils increased the risk of complications during the procedure and over the life of the patient. Dr. Cloft's perspective that this approach isn't much riskier than the use of adhesive was reassuring, however. Maybe what Chris and I read was related to a different use of the coils.

Dr. Cloft explained that platinum coils will be used, so they won't set off metal detectors and Garrett can still have MRIs to track his progress. When Chris asked what would happen if a coil were to come loose, Dr. Cloft said it would just travel down to another part of the vein and shouldn't be much of a problem, and he added that it's very unlikely one would come loose. The coils will essentially be packed into the vein like a bird's nest, so they should be stuck to each other as well as clotted over.

So that's what's going on this morning. Here's more of a breakdown of what happened with our long day of followup appointments yesterday ...

7:30 a.m. - Garrett had a chest X-ray. I thought it would be the same as the chest X-ray he received in the ER in Wabasha, where he was able to just lay on the exam bed, but here he had to be held in a seated position against a board. It's tricky to hold a four-week old in the upright position like that, with our own arms and hands out of the way. Garrett didn't enjoy it one bit.

8:30 a.m. - Garrett was off to have an MRI/MRA, which took about a half hour, and I got to stay with him the whole time. I think they expected Garrett to squirm and fight being restrained, which is why they wanted a parent nearby, but he pretty much slept through the entire thing. That was a little surprising, given how loud the machine was. We both wore ear plugs, but it was still awfully noisy. Then again, I imagine all the padding placed on either side of Garrett's head to help ensure he stayed still probably muffled the noise enough to sound about the same as being in the womb again.

10:45 a.m. - We met with the cardiologist, Dr. Cabalka. She said Garrett's heart is looking good. It's still large, but it's smaller than it was. They took his weight, too, and I was happy to see he's back up to his birth weight. He left Saint Marys at 2.88 kg, and yesterday weighed in at 3.2 kg.

1:15 p.m. - We met with Dr. Wetjen, a pediatric neurosurgeon. I don't believe Dr. Wetjen was involved in the actual procedures Garrett has had, but he was the first neurosurgeon to talk to us the first morning we came back to the PICU. At the appointment yesterday, he told us Garrett is doing surprisingly well -- much better than he expected. Apparently he's treated five other cases of vein of Galen malformation, all infants within the first days of life, and none of them survived to leave the hospital. Those were treated during his training in Utah, and he thinks our surgeons are better and the technology is better now, too, but that explains why he was all doom and gloom when we first met him.

Apparently yesterday's MRI showed that the ventricles in Garrett's brain were getting bigger, which isn't good. Garrett's head circumference had also increased from 35.6 cm (the last recorded size) to 37 cm. Dr. Wetjen said he'd just place a shunt in Garrett's brain to drain the fluid into his abdomen.

The procedure is pretty low risk, with less than 1 percent chance of neurological complications and only about 5 percent chance of infection. He noted that it was pretty common that part of the shunt would need to be replaced within the first two years, though.

Dr. Wetjen has installed shunts plenty of times. It takes about twenty minutes, and normally patients go home afterward, but because Garrett is so young and because of the vein of Galen malformation, he said they'd have him stay at Saint Marys for a few days just to keep an eye on him.

That was the original plan.

2:15 p.m. - We met with Dr. Nickles, the pediatric neurologist. From everything she checked, she seemed to think Garrett was looking good. She agreed with Dr. Wetjen that the ventricles were enlarging and needed to be addressed before the hydrocephalus caused any problems in the brain.

She explained again that Garrett should outgrow the antiseizure medicine in a few months. Essentially, as he gets bigger, the same dosage will do less and they'll just take him off it.

We didn't ask specifically about his future development at this appointment, but she probably anticipated our concern and said not to worry about whether he'll be "Harvard material," but just focus on getting him to gain weight so he can do better with his next embolisms months from now. I'm not thinking about where he'll go to college, but I am concerned about the huge unknown of what challenges he might face after all that he's been through. She said he's at risk for developmental problems. That doesn't guarantee he'll have them, but he's had "too much instrumentation in his brain" not to be at risk.

I think I might ask next time how much risk "at risk" means. I feel better having actual numbers, even if they're loose figures. Even if the likelihood is relatively small that he'll be able to grow and thrive and develop as if nothing ever happened, I can at least know that it's a valid possibility and try to direct my expectations and positive energy there.

4 p.m. - We met with Dr. Lanzino and Dr. Cloft, the neurosurgeons, for our final appointment. Dr. Wetjen stopped into the exam room first, however, to say that he had looked at the MRI/MRA some more with Drs. Lanzino and Cloft, and there was a change of plans. Apparently Dr. Lanzino had found an article about a doctor in France who had treated 400 cases of vein of Galen malformation. Obviously, that's a huge number of cases, considering how rare the condition is. Unfortunately, this doctor has passed away, but he has left some useful research. From the French doctor's experience, using a shunt to drain fluid in the brain takes pressure off the vein of Galen and can cause a brain hemmoragh. So obviously they didn't want to do that anymore.

Instead, they decided it would be best to try to finish treating the malformation. Reducing the excess bloodflow should reduce the obstruction currently preventing the fluid in the ventricles from draining properly, so both the vein of Galen and the hydrocephalus would be addressed with the procedure. The neurosurgeons reiterated that they'd rather wait until Garrett was older, but they believe the change in his brain is enough of a reason to do it now.

Interestingly, Dr. Cloft said the MRI showed that the malformation itself was actually improved more than he thought it would be at this point. Some of the additional feeder arteries had even clotted off on their own.

It's strange that Garrett's heart and the malformation were looking so much better, but the ventricles were still enlarging. If the malformation was improving, it seems like the ventricles should be better able to drain properly.

Hopefully his procedure today will be as uncomplicated as before and he'll come through with flying colors. This should be last one, unless for some reason they're not able to close off as much as they'd like.

Dec. 10 - Embolisms Again!!??

We had a full day of follow-up appointments at Saint Marys today. I'll go into the details later, but the bottom line is that despite both his heart and the vein of Galen malformation improving, he has increased fluid retention in the brain (hydrocephalus), and so the neurosurgeons believe it is best to do more embolizations tomorrow and try to finish treating the malformation.

When I hear "hydrocephalus," I think of developmental issues, but thankfully since they've been watching him so closely and are aware of it before there are any symptoms, they don't think the pressure the fluid is placing on the brain is problematic yet. Just the same, it's best to take care of this sooner rather than later.

I'll need to get up around 3:45 a.m. to feed Garrett one last time, as he's not supposed to have anything four hours before the procedure. We'll need to be at Saint Marys by 6, although they don't expect to take him for the surgery until 8. We'll spend the rest of the day and Friday night in the PICU. Then we'll probably be on the general floor for the next couple of days.

When he had his last procedure, he had to fast starting at 4 a.m., but it took him so long to wake up from the sedation, he didn't eat until 7:15 p.m. Maybe I should take advantage of the break from nursing and treat myself to a nice, strong drink ... or two.

Dec. 9 - Snow Day

Garrett's umbilical stump finally fell off yesterday. At 26 days, is that some kind of record? Maybe they did something to try to keep it intact while they had the UVC lines running through it in the PICU.

Today we would have been snowed in if Chris didn't have a truck with four-wheel drive. With that, he managed to escape the driveway and get to work just fine. I would have thought Bailey, our Chocolate Lab/German Wirehaired Pointer mix, would have had the sense to stay inside today, but I was wrong. She sleeps in the garage and usually runs outside when Chris leaves in the morning. Lately she's been annoying me by barking at deer or turkey or who-knows-what down in the woods about ten minutes after Chris leaves. If I'm not fast enough at getting her back inside, she blows my chance at sleeping in by waking up Jonathan.

This morning she just sat at the door and whined -- which has an equal chance of waking Jonathan. As I got out of bed to let her back in, I wondered why she didn't just go hide out in her dog house if she didn't like the cold and snow. When the sun came up, I discovered her dog house was essentially inaccessible. You can see just the roof of it in the picture below.

With all the drifting, it's hard to tell how much snow falls out here, but according to KARE 11, Wabasha topped off at 11 inches. Chris was our own Frosty the snowman as he plowed out our driveway.

And Jonathan thought he ought to get a ride in the skid loader.

Dec. 7

Yesterday, Chris and I survived our first attempt at running errands with the boys. In addition to getting groceries, we wanted to pick up a winter coat and size 8 shoes for Jonathan. I swear he must have gone through a growth spurt while I was away. Chris probably didn't notice the difference, but Jonathan looks huge to me now.

Chris gave Garrett a bottle in the van while I took Jonathan into Children's Exchange. They didn't have tennis shoes in his size, but they had plenty of coats. Jonathan wasn't interested in sitting still to try them on, though, and when I let go of him to put the first coat back, he took off down the aisle and disappeared around the corner. Of course, with him being only thirty-some inches tall, I'd be hard pressed to find him by just looking, but thankfully I could follow the sound of giggles and little feet hustling nonstop to track him down by some jumperoo toys that caught his attention.

I tried distracting him with a book and reminding him that he needed a coat to play outside when we got home, but those efforts were useless in getting him to stay put. I ended up wrestling the next few coats on, with Jonathan claiming they were "too big" before he even had an arm in a sleeve. I quickly decided on the first one that fit and looked like it would be warm enough.

At least when we got groceries, Jonathan was securely strapped into the cart. That little guy is fast! He'd probably make it to the opposite end of the store in the blink of an eye if he had the chance. And thankfully Garrett doesn't seem to mind the car seat. Jonathan hated the car seat as a baby, so it's quite a change to be able to haul the seat around without worrying about a very unhappy baby inside.

Although he's still sleeping much of the day, Garrett only woke up a couple times to eat last night. Well, technically, I woke him up the second time. And since he didn't need a change of clothes due to spit up or a diaper changing catastrophe, it felt like we all got more sleep. Woo-hoo!

He seems to be eating even better now, too -- staying more attentive longer when nursing and finishing 2.5-ounce bottles with no problem -- and without me pushing for him to finish them. My sister pointed out that babies' stomachs are very small, so he was probably throwing up because he was overeating. Since the last two times he'd thrown up were after I gave him a bottle and had prompted him to eat more than the 1.5 ounces he seemed satisfied with, I figured she's probably right and I just need to ease up ... again. Hopefully we'll see some reasonable weight gain this week.

Although we're not worried about Jonathan's weight, it's still good to see him him have a healthy appetite, which he did when we had soup for lunch today. (I think Jonathan would eat soup for every meal if we'd let him.) One thing that surprised me when I came back home from the hospital was seeing how well he does with a fork and spoon now. He was starting to get the hang of using utensils before I left, and would sometimes manage to get something on his fork or get a spoonful of food to his mouth without spilling, but he still needed help for the most part. Now he can eat a whole bowl of soup by himself with very little mess.

So today he started out with half a can of chicken noodle soup. When he was done with that, he still wanted more, so I warmed up the rest of it. He was looking pretty tired when I brought it to the table, and I asked if he wanted to take a nap instead, but he said he wanted the soup. (He hadn't had a nap yet, as I'm testing whether he'll sleep longer if I wait until early afternoon instead of late morning for his nap.) Once he was settled, I took Garrett to change his diaper. I was hardly gone more than a minute, but when I returned, Jonathan was conked out in his highchair.

Unfortunately, he didn't take the two-hour nap I was hoping for. He actually slept less than the normal hour and a half, which didn't leave me with enough time to nap after feeding Garrett and putting him back down to sleep. Just the same, the day went more smoothly than last week.

I don't like resorting to letting Jonathan watch videos, but have realized it may be the lesser of two evils (the other being having a frustrated toddler who's confused about why he's not my only priority) and went ahead and let him watch Blue's Clues to his heart's content. He didn't just veg out on his little foam Lightning McQueen chair, though. He actually sang along to the songs and performed the gestures for things like "Head, Shoulders, Knees and Toes." And he eventually had his fill and started playing with his toys again.

Hopefully tomorrow will go just as well, but with time for Mom to nap, too.

Dec. 5

Garrett's appointment with Dr. Spano in Lake City yesterday went fine. I knew Dr. Spano was aware of Garrett's history, and I assumed his nurse was too, but I guess she wasn't. That would explain why she said he didn't need his clothes removed to be weighed. His weight (clothed and with a potentially dirty diaper) was 6 pounds 9 ounces, or about 2.9 kilograms. (His birth weight was 7 pounds, and I'll feel better when he gets past that.) His last weight recorded at Saint Marys' was 2.88 kilograms, and that was three days earlier, so that makes me a little nervous about whether he's really gaining anything.

I would think he should be gaining, because he's been eating really well and hasn't been throwing up anymore since he's been home ... for the most part, anyway. There have only been a few times he's lost a whole feeding since leaving the hospital. Other than that, he rarely even spits up. He'll have some enormous burps (think Barney Gumble), but even then, it's rare that anything actually comes out. My sister pointed out that different scales will weigh somewhat differently, too, so maybe that accounts for the insignificant change.

Just the same, I need to do a better job of following through with the dietitian's suggestion of giving him breast milk with formula twice a day. We've been working on it, but he didn't seem to get the hang of the bottle until last night. Now he seems to do pretty well. The last two bottles, however, he only took about 1.5 ounces. I remember someone at the hospital saying babies usually eat an ounce an hour, and since it had been two hours since his previous feeding, I expected him to finish two ounces. Maybe he'll do better with that over time, too.

When Garrett cried a little at his appointment, Dr. Spano pointed out that he might also be "tongue tied" (a condition in which the membrane connecting the tongue to the floor of the mouth is unusually short and thick, decreasing the mobility of the tongue and impairing speech). He said it's easy to fix by just snipping the membrane, but he'd watch it for a couple months to see if it's an issue. Geez, like Garrett needs another medical issue to deal with.

I wonder if a person could really tell whether it'd be a problem within the first few months of life. Apparently, it's supposed to make it difficult for infants to latch on when breast feeding, and that hasn't been the case for Garrett. So if it's a matter of determining whether he'll have trouble forming certain sounds, I would think he'd need to be old enough to try making those sounds first. Well, that's the least of his problems right now.

I think (and hope) Garrett is getting his days and nights straightened out now. When we first brought him home, he didn't seem to be awake much during the day, but would be awake for an hour or more at night. Part of that time would be spent with him eating and getting his diaper changed, and another part would involve me bouncing back and forth between bed and his bassinet. I'd climb back under the covers when he'd seemed comfortable, and inevitably go back as he'd start making noise again -- primarily an "eeeehhh?" that sounded like he was trying to burp.

Eventually, I figured out he wasn't trying to burp, but rather was apparently wondering where everyone was. Since he didn't like laying in the dark, I brought a lamp in near his bassinet that has three brightness levels and left it on low and put stuffed black and white spotted cow close enough for him to see. He seemed pretty content looking at that, or the wall beyond it -- content enough for me to feel better about going back to sleep myself. I'd like to interact with him while he's awake, but I also know I'm not going to be much good during the day if I get even less sleep than I'm able to now.

He was awake for about an hour before bed last night and probably an hour or more this morning, so that's encouraging. I'm sure most parents would be thrilled to have their newborn sleep so much. I'll admit I appreciate the low-maintenance aspect of it, but there's a part of me that keeps questioning whether that's normal and wishes he would at least wake up more frequently to eat until we were comfortable with how he's gaining weight.

Today, Jerry, Pam, Wendy and Cody came to visit. While each spent some time holding Garrett, Jonathan got a lot of attention, too, and was quite entertaining as he danced to the Hokey Pokey and sang John Jacob Jingleheimer Schmidt. We took advantage of the additional hands and got a couple decent pictures outside of the hospital setting.

First Days Home

Boy, does it feel good to be home! Oddly enough, our first night home is already a blur. The only thing that really stands out is that at one point while I was feeding Garrett, Jonathan told me, "Baby Garrett all done! Put away!" and Jonathan didn't go to sleep like normal either. Well, "normal" before Garrett came along involved Mom rocking him to sleep -- something I knew would have to change, but didn't try to hard to modify before his sibling arrived, since I figured he'd probably regress then anyway. While I was at Saint Marys with Garrett, however, Chris would just put him in his crib and he'd go to sleep on his own. Amazing!

With me being home again, however, he cried and called for me when Chris tried to put him down. So, my first night back, Chris ended up rocking him to sleep and putting him to bed. Last night, however, Jonathan fussed a little when Chris started rocking with him, but calmed down and Chris was able to put him down while he was still awake. So it looks like we'll be able to stick with the new routine they established for his bedtime.

Yesterday actually went better than I thought it would. Chris is working again now, so I had both boys to myself all day. Jean gracefully offered to help if I needed a hand, but things were going pretty smoothly when she called to check in in the morning. I woke up at 7:20 to both boys making noise. Jonathan was saying, "Baby brother! Baby Garrett!" I'd be surprised if he could hear Garrett, who was sleeping in a bassinet not far from our bed, but maybe he did.

So I picked up Garrett, headed downstairs and told Jonathan I'd be right in to get him after I changed Garrett's diaper. With Garrett freshened up, I set him in his crib (he'll eventually sleep in the same room as Jonathan, so we have his crib set up there now), took Jonathan to change his diaper, and then figured Jonathan could wait for breakfast while I fed Garrett.

That seemed to work all right yesterday, but this morning when I tried the same steps, Jonathan was insistent that he wanted "oran-juice" while Garrett ate. He wasn't happy about having to wait, and when I was ready to get his orange juice and breakfast, he fought sitting in his high chair. I thought Garrett could give me a few minutes to get Jonathan set before I burped him, but was wrong and he threw up.

While I was dealing with that, Wabasha Clinic called to move my follow-up appointment with Dr. Schwend from tomorrow to this morning at 9:30. I didn't want to wait until next week to get my stitches out (I hadn't thought about the possibility of stitches healing over until recently, and I think mine had started to -- d'oh), so I decided to scramble to get ready. Jean was a lifesaver and picked up Jonathan, but I still had trouble getting ready and out the door. I had to give Garrett his medicine, with one involving cutting three-quarters of a pill, crushing it and sucking it up into a syringe with water, which is more time-consuming than I'd like. (There's a liquid version of the medicine, but it's over 13 percent alcohol, so it's not ideal for babies.)

Jonathan wasn't appreciating the little attention he was getting in the mean time. "Mommy, come here! Baby Garrett all done now!" I think he was happy to go with Jean, where he'd get some undivided attention.

So this morning was pretty crazy. I feel a little cheated that we're not getting the week of family time we had planned on with Chris at home while we figure out our new routine, but that plan didn't include the Saint Marys experience, and I should probably just be thankful that Chris was able to take an additional week off while we dealt with that.

Jean will watch Jonathan tomorrow morning, too, so I can take Garrett in for his first appointment in Lake City. (I'm not sure what they'll do, other than take Garrett's weight and measure his head circumference.) And then the weekend will be here and Chris will be home to help dole out attention.

Hopefully the rest of this afternoon will go better as well, since I won't be rushing to get out the door. I feel bad telling Jonathan to wait all the time. Well, I guess it's not so much the telling him to wait as the fact that my tone starts to get pretty impatient -- especially when he's trying to push and pull at my legs while I'm changing Garrett's diaper and dealing with the noise from two unhappy little guys.

I don't want to be that frazzled, flustered mom, especially when I've been away for so long. I won't mind being the mom with unbrushed hair who's still in her pajamas at 2 p.m. and has a sink full of dishes waiting to be done, so long as that mom has a relatively peaceful house with boys who know they are loved.

Saint Marys - Day 17 - Going Home!

Yes, we're finally going home today! Woo-hoo! (I've had Michael Buble's song Home in my head since rounds this morning.)

Even though Garrett seems to be doing well with feeding, he hasn't been very consistent about gaining weight (did you know breast milk only has about 20 calories per ounce on average?), so they're sending us home with instructions to give him formula-fortified breast milk twice a day to increase his calories another four calories per ounce. That wasn't the plan at rounds this morning, but when the dietitian stopped in, I mentioned that I really don't have any issues if they want to supplement the breast milk just to be on the safe side. When she talked with the pediatric team, they agreed it would be best to do that.

But now I need to pack up and get ready to head out! I'll post more later.

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.