I'm Ready For My Close Up

So says Samuel :) Looks like our boy will be able to list cover model on his resume. This year marks the 20 year anniversary of Lucile Packard Children's Hospital. The hospital's media director approached us about participating in an interview on the preemie/NICU experience with the Palo Alto Weekly. We are so happy with the stellar care Sam is receiving, we were more than willing to sing LPCH's praises to anyone that will listen. We did not know Sam was going to be on the cover. After my 5:30 a.m. pumping, I threw a sweater over my pajamas and hit a newsstand on University Ave. Imagine my surprise when I saw Sam's cute face, big as day, on the cover. Pretty neat thing to put in his baby book. Here are links to the 3 sections of the story:

Feature story: Delivering hope at Lucile Packard Lucile Packard Children's Hospital celebrates 20 years of evolving medical care http://www.paloaltoonline.com/news/show_story.php?id=21263

Bringing a new culture to hospital care http://www.paloaltoonline.com/news/show_story.php?id=21265

Milestones at Lucile Packard Children's Hospital Research, surgical and clinical highlights, 1991-2010 http://www.paloaltoonline.com/weekly/story.php?story_id=14957

After being extubated and put back on CPAP on Tuesday, Sam is having a great week! He's been holding steady. What a thrill to see. I was able to hold him again Wednesday morning and Thursday night. Feeling his warmth against my chest is just heaven. Daddy is looking forward to a cuddle session tonite.

Mom & Dad took a brief break from the craziness to do some grown up stuff. Early in the week, we headed over to the tennis center at Stanford to watch the Gators defeat the Cardinal for the Women's doubles and team tennis championships. Go Gators!

Last night, we had a nice dinner at some newish bistro/wine bar in PA with Auntie Sophia and Uncle Milk Man after they met Sam for the first time. It was a nice break in the craziness that is our life. We are so relieved things are looking up this week. I'm almost scared to be happy, as another crisis might crop up. We're trying to take things day by day and enjoy each little victory.

Boys Night In

Is this not the cutest picture EVER?! Knowing what a powerful moment it was for me to hold Jr. for the first time, I couldn't wait for Daddy to experience that. Sunday night, it was time. Steve's heart absolutely melted. I loved watching him hold Sam so tenderly, rocking him and telling him what a sweet, good boy he is. It was a lovely way to end a very sad and traumatic weekend.

Samuel has been doing great this week. Perhaps his visit from Auntie Dayna is what has him in such a good mood :) During this morning's visit, we learned Sam will be having a big day. He's being removed from the ventilator this afternoon and placed back on CPAP. Hopefully, his little lungs have gotten a bit stronger and he can maintain this time. Fingers crossed.

The bandage was taken off the incision from his surgery. It's healing so well, you can hardly see it. Fountain of youth. If Sam was hoping to show off his scar in an attempt to be a bad ass, he's out of luck.

Send the loving vibes this afternoon and wish little Sam big strength!

Joy & Sorrow

During my afternoon/evening visit with Sam on Friday, the NICU was abuzz with activity as they prepared for the arrival of a new little guy being born at 34 weeks. It was crazy how many people were running around setting things up. I heard, "He's coming!" Then seconds later, another tiny little being arrived and the team fervently worked on him. Though wearing scrubs, the worried dad was easily identified, as he stood by watching his brand new son being poked, prodded and hooked up to machines. It made me think about how Steve must have felt being in those same shoes 3 weeks ago. That made me think of all the trauma that led up to Sam's arrival. I was shaken and had to leave the room. I didn't want to be reminded of those scary moments Steve suffered wondering if our son was going to make it

I enjoyed a nice long visit Saturday. Sam enjoyed meeting his Auntie Kris. I was thrilled to learn I would get to hold Sam again, but things didn't work out. The baby boy that arrived last night, we'll call him Baby Boy N, Sam's neighbor to the west, was having alot of trouble. There was also a little girl, Sam's neighbor to the north, that arrived the previous night after we left, who was in bad shape. We'll call her Baby Girl M. Both babies were having alot of distress and all the nurses were pitching in to help. It was way too crazy in there for our nurse to orchestrate the hand off from bed to my chest.

M's parents were sobbing at their child's bedside. Obviously, things weren't good. I felt for them and wanted to wrap them both up in a loving embrace and tell them it would be okay, but it soon became clear it wouldn't be. 2 by 2, family members came in to see M. Then the priest showed up. Next thing I know, the entire family was allowed into the NICU (only 2 people at the bedside usually allowed) and they gathered around M's bed. The priest baptized her and prayers were said. I prayed with them. The pain they felt was palpable. I left that afternoon feeling so sad, wondering how an innocent baby girl could be subjected to such cruelty. When we returned that evening, M was gone.

That evening, the nurse immediately asked if we wanted to hold Jr. Of course, we were so excited. He was placed in my arms and it just felt perfect. Such a tiny little treasure. I kissed his little head and never wanted to let him go.

Baby N, was surrounded by various doctors and nurses. He was hooked up to machines I'd never seen before. So many. I started hearing the words "comfort" and "morphine". My heart dropped and we realized what was about to happen. He was taken away, we assume to spend his last moments with mother, who was unable to come from her room to see him. Then the staff put up screens around his bed and started breaking down all the equipment. N was gone. The screens were suppose to be for our benefit, so we would some how be less affected by what was going on, but watching the massive amounts of equipment being broken down and carried out, the screens couldn't hide a thing. We held each other and looked down at our beautiful Sam, who continues to do so well, realizing how lucky we are despite the long road ahead. We were filled with joy and sorrow at the same time. It all just seemed so unfair.

The respiratory therapist apologized for what we had to witness, but explained there would be another baby along that would need the bed. We knew that, but it didn't make our hearts ache any less for those families and the loss they suffered. We enjoyed our quiet time with Sam and didn't leave until after 1am. We're not religious people but we held hands and said prayers for Baby M and Baby N and their families before bed, wishing them comfort and peace.

Look at your beautiful children. Listen to their laughter and think of how it makes your heart smile. Remember how lucky you are they are safe and well. There are so many things that could have gone wrong. Be eternally grateful for everything that went right. Hold them tight.

Upward Trend

After a wild and wooly weekend, we are happy to report Sam is doing much better this week. He turned the corner on Tuesday. I think. The days are all a blur. Anyway, he's much more stable and has been weaned down on the ventilator quite a bit. We expect he'll be off it and back on the CPAP next week. He's gotten rid of the fluid that had him puffy and looking like E.T. He looks like his adorable self again. Doc thinks the fluid in in his lungs is drying out a bit too.

A 2nd ultrasound of Sam's head this week showed no signs of a brain bleed, so looks like he's out of the woods on that front. One less thing to worry about.Yay!

Feedings of Mommy's milk were discontinued, but were started up again a couple of days ago. So far, he seems to be tolerating it well. He's been pooping and farting like a champ. While we may curse this when he's a grown boy, its a great sign for now that his digestive tract is moving stuff along. Last night's attempted diaper change was a hoot. He was wet and fussy. As soon as I got the wet diaper out from under and the clean one in place, he started to poop. I wiped his butt and was ready to slather his bottom with Aquaphor. He pooped again. Seriously?? Got him all cleaned up and another diaper in place. Guess what?? HE POOPED! Gaaaaahhh! Jr. is going to make sure I have this diaper change thing down! The next attempt was successful. Geez!

Samuel received members of his fan club late this week. Nanny (Gramma Foster), Auntie Maggie and Auntie Cynthia popped in for a quick look see. They all agree he is just precious and I must agree :)

A special thanks to Uncle Bruce and Aunt Sophia. They are storing all our milk in their brand new freezer in their garage. It's insane how quickly ours filled up. Bruce came by with a cooler, packed it up and off he went. We now refer to him as Uncle Milk Man.

Also, a big thanks to my Communications posse for the bouquet we received yesterday. Flowers? Oh no. It was a bouquet of COOKIES!! It was waiting for us when we arrived home around 11pm last night. After a late dinner, we scarfed a couple of them down. Delicious.

Jr. is going to be a well dressed little dude thanks to Jon & Mikhaela, Tammara and Bree. They all sent/delivered tiny little man sized threads this week. I think a photo shoot with a few wardrobe changes is in order when Sam comes home.

It's been such a relief to see Sam looking so comfortable and not in distress this week. Hopefully, this is the beginning of an upward trend. Keep up the good work, honey!

The Worst Day Yet

What a weekend. Chock full of excitement. Not the good kind. Sam is having a rough time as he recovers from Friday's surgery. Though we're told what he's experiencing is par for the course (I might punch the next person that says that to me in the nose), it sucks. Horribly. He's been retaining a lot of fluids all over, including his lungs. Hence, his new nickname of Puff Baby. After administering diuretics, he started peeing up a storm and is looking like himself again, but still has fluid in his lungs. Diuretics are being increased to try to dry his lungs out.

The most terrifying incident occurred yesterday. Shortly after we arrived, he had a terrible desat. The saturation of oxygen in his blood should be between 85 and 95. I remarked to the nurse his color didn't look good. Then it got hairy. His levels steadily started falling and upping his oxygen a bit wasn't doing the trick as it usually does. The nurse decided to bag him, meaning administer breaths manually. That wasn't working either and the nurse feared his breathing tube had dislodged. They prepared to remove it and re-intubate. His numbers fell into the 50s. The respiratory therapist and another nurse were called over. Steve and I stood by, watching Sam turn blue. We thought he was going to die. His numbers dropped into the 30s. Our hearts were in our throats and we felt helpless. His chest did not rise and fall. Soon after, his numbers began to climb. It appeared there was in issue with tubing on the ventilator that required some fiddling to correct. Steve and I held onto each other and exhaled, still not believing what we had just witnessed.

When things settled down, the nurse raised the roof on spaceship and we were able to touch him. I cried at his bedside and told him he better never do that to us again. This being a parent business sure ain't for the faint of heart. If someone told me Sam would recover fully and never have a moment of distress again, but I had die, I would lay down my life for him without hesitation. I know Daddy would too. The love we feel for this little guy is just...It's just....I don't even know how to describe it.

We were at the hospital for 12 hours yesterday, too scared to leave him. The nurse on the night shift let us help change out his bedding. I changed a whole bunch of diapers, a bandaid on his boo boo and we rubbed him down with Aquaphor. I think she sensed we really needed some closeness to the boy and needed to feel like we could do a little something. Bless her.

When we finally made it home, I washed my face, ate about a dozen thin mint cookies that had been in the freezer (You must try this. Yum.), pumped and collapsed.

So, we just watch and wait and hope his lungs dry out soon and we can put this weekend behind us.

Funny story....A couple nurses told us there was another baby Samuel in the NICU not long ago and his bed was in the exact spot as our Sam's. He got well and went home, but his spirit must've stayed behind since that spot is where I had my vision of naming our boy Sam. Kinda freaky coincidence, no? The nurses did say the other Samuel's parents insisted he be called Samuel, NOT Sam. Snobs! :-P

I'm happy to report my cankles (why doesn't my spell check recognize cankles?) are gone! I'm unhappy to report that issue has been replaced by a very unfun new one. Apparently, my hormones are raging and causing extreme night sweats and occasional hot flashes. Awesome! This is supposedly quite normal after giving birth, but dang! I feel like I'm getting my ass kicked straight into menopause! Can a sista catch a break up in here??

The nurse practitioner in charge decided to try to feed Sam breast milk today through the tube to his tummy. Sam's personal nurse, Auntie Brigid, got everything set up and let me give it to him. Indirectly, but from Mommy's boob, nonetheless :)

After I finished pumping earlier, a drop fell on my hand and I licked it without thinking. It was really, really sweet. Don't know what I expected. I relayed this to Steve and watched his face scrunch up in disgust. LOL! Maybe I can get him to try it with a stack of Oreos like Ross did on Friends. Ha!

Oh crap! With all of yesterday's craziness, I forgot we did actually venture out on Saturday for a bit for a family dinner with the Smiths (Ollivette and E. Gary) and the Miles-Hances (Gary and Paul). Cherie even made a guest appearance! Yay! We're not comfortable being more than 10 minutes from the hospital, so having to travel the whole 90 seconds to the Smiths, made it easy. It was great to be with good friends, enjoying good food and conversation. Auntie Eija and Uncle Chris stopped by to drop off a scrumptious casserole, which is warming up for lunch right now. Time to eat, try for a nap and head back to the little guy, who is having a much better day today.

Where Did The Week Go??

Wooo wee! This week has flown by. Our little Sam is 2 weeks old! Can you believe it?!

2 more firsts for the week. Mommy got to change Sam's poopy diaper on Wednesday. Little as he is, Samuel was able to make it a blow out of sorts. Thanks, kid!

To go with along with this, Sam also gave me the finger. I wonder if he didn't like my singing? Where is he learning this naughty stuff? Maybe I need to put one of those stuffed bear nanny cams in his incubator to see what those nurses are up to :-P Actually, our boy has nice long fingers and does funny things with them. The middle one came up and stayed. The others followed a few seconds later. As you can see in the photo above, he's managed to find his mouth and tries to stick his fingers in there often. Serious cuteness. He's also making all the cute faces that babies make. Lots of adorable yawns. Oh, he also likes to scowl alot too. I just want to eat him up! His little face is filling out a bit and he looks more like a baby instead of a wrinkly old man. He still has the old man booty though. Hopefully, he'll get more meat on his bones soon.

On a more serious note, our boy has a condition called patent ductus arteriosus (PDA). Before birth, a baby’s blood is oxygenated by the placenta, not the lungs. Because of this, the circulatory system of a fetus is very different from that of a newborn baby. A small amount of blood goes to the lungs to nourish them, but most of a fetus’s blood bypasses the lungs completely. Instead of going to the lungs, blood flows through the ductus arteriosus (a hole between the pulmonary artery and the aorta) and out to the rest of the body.

After birth, the baby begins to breathe and the lungs start to oxygenate the blood. When this happens, the PDA should close, allowing blood to flow freely to the lungs. However, when the ductus arteriosus does not close, deoxygenated blood flows through the PDA, into the aorta, and out to the body instead of going to the lungs to become oxygenated.

Most small PDAs will close on their own, with no treatment. Unless a baby is having a lot of symptoms from a PDA, doctors will simply monitor the baby closely and wait for the ductus arteriosus to close. A baby may be put on fluid restriction while doctors wait for a PDA to close. This helps reduce the symptoms of a PDA because the heart has less blood to pump and doesn’t have to work as hard. Samuel's is on the moderate to large side. Attempts to treat with medication didn't work too well. They could try a different medication, but the restriction of fluids and halting of feedings can cause other issues. There's no guarantee the meds would work anyway, so Sam will be having surgery tomorrow, most likely.

At first thought, surgery seemed really scary on such a tiny guy. We spoke to several doctors and nurses that said this procedure is so common, they do it all the time and it takes longer to set up for it than to actually do it. It's done in the NICU and takes less than 30 minutes, but usually around 15. This is actually the less sucky of the 2 possible diagnoses for his issues. The other was some sort of infection, which could travel throughout his whole body and cause terrible things like meningitis. Fortunately, all his lab work does not indicate infection.

Sam will probably have a couple of crummy post op days, just like anyone who has surgery. Hopefully, the increase in fluids and restarting of feedings will put him on the desired path. PDAs can cause all the issues he's having, so we're hoping to see more of an upward trend. We're hoping to have him off the ventilator next week. We'll let you know how he does.

Okay, started this entry last night, but didn't finish, so here I am. We got the call this morning that Sam's surgery would be at 11am. I was at a doc appointment, so didn't get there in time to see him before he went under. Daddy told him I said hi though :) Sam's PDA was larger than appeared on the echo, so 2 tiny little clamps were required to ligate the vessel instead of one. The procedure was over in less than 30 minutes and the surgeon said everything went well. We went in to see little dude shortly thereafter. He was spread eagle in his bed and completely stoned on morphine. The nurse said he probably wouldn't wake up until tonight. His vitals were rock solid, which is a great sign. Phew! Glad to have that over with and look forward to seeing him rebound from this. Keep up the great work, little guy! Mommy and Daddy love you!

Time for some serious shout outs once again to the Auntie Brigade. Sam enjoyed meeting his Auntie Dayna on Monday! Dayna also brought us a delicious meatloaf, scalloped potatoes and a cherry pie. I'm warming some up as we speak for lunch. Auntie Tammara came by yesterday. Sam was doing some hand holding with both the ladies. 2 weeks old and already a playa! Auntie Maggie kicked my ass for trying to do laundry. She took over, washed 3 loads and folded it all Martha Stewart style. Auntie Kris sent Mom and Dad a gift basket from Cowgirl Creamery. Mmmmm, cheese! We're going to try to find an hour over the weekend to sit on the patio and enjoy. Thanks so much gals! You're the best and we love you!

On a gossipy note, when I left the hospital a bit ago, I saw Alex Smith leaving the hospital with his wife and new baby. And for those of you that know me so well, NO, I did not interrupt their Hallmark moment to give Alex some pointers on his game :-P Congrats to the Smith family! That's all I gotta say.

On a completely unrelated note, I saw a Ford Pinto on the road on my way home. When's the last time you saw one of those rusty buckets???

I can't believe 13 days ago, we weren't sure Samuel would survive. Now, we feel he's going to do just great. He just needs to bake in another oven for awhile. He continues to be quite feisty, which the doctors say is a great sign. Somehow, I think we're already seeing exactly who he's going to be :)

Time to enjoy my meatloaf. I might even manage to get a short nap in. Woo hooo!

Weekend Update

From teammartz.com

Let's finish up Friday. On Friday evening, Sam opened his eyes widely quite a bit. His eyes look brown, maybe even light brown. Kinda hard to tell with the club lighting in there. I spoke to him and when Steve, who was standing above me, chimed in, Sam's eyes clearly looked in his direction. He may not be able to see Dad yet, but obviously recognizes his voice.

It's been a tough weekend for our little guy. He continues to have clusters of episodes where he stops breathing for an extended period of time. It's a combination of his brain not being developed enough yet to remind him to breathe and the muscles in his chest wall not being strong enough. He just gets tired. We're told he will grow out of this around 34 weeks. Additionally, the oxygen levels in his blood go down, which is called desaturation or a desat. He sometimes has a difficult time coming back from this without help from the nurse or doc. They turn up the oxygen a bit to get him back. There's been talk of putting him back on the ventilator for the past couple of days. The nurse said she would call us if that happened. Each morning we woke up without getting a call in the middle of the night, we breathed a sigh of relief. Until...

I roused myself to pump Sunday morning. Shortly after I finished, Steve's phone made a buzzing sound while he was in the shower. For some reason, I immediately thought it was his mom, as I'd left her a message the previous night. Then my phone rang immediately thereafter. It was a Stanford number. I called Steve into the bedroom as I answered. The doc told us Sam continued to have a rough time of it. A chest x-ray showed some haziness in his right lung, which could indicate some sort of infection or pneumonia. Their concern with tiny babies is the infection won't stay in one place, so they took blood and urine to check for signs of infection elsewhere and here's the scary part....They would be doing a spinal tap to pull a little fluid to check for infection there as well. The thought of a needle being put in Sam's spine was terrifying and I lost it trying to relay all this to Steve. We dressed and dashed off to the hospital.

After a few hours there, the decision to put him back on the ventilator was made while I was off pumping in the parent's lounge. Steve came to tell me the news. Neither one of us wanted to see this happening, so we waited in the hallway for awhile. We went in when they were finished, but were still fiddling with things to get them exactly as they wanted them to stabilize him. They also performed another x-ray to ensure the tube was placed in the right spot. Nurses and doctors keep saying he's doing well, all things considered and he's way better off than many kids in the NICU right now. Sure doesn't make our hearts ache any less to see him struggle. It also makes my heart ache for the other babies that aren't doing so well and the parents that are out of their minds with worry for their little ones. We stayed for a bit longer, then headed home. More pumping and a very late, but scrumptious Mother's Day breakfast prepared by Hoty.

After a much needed nap (and more pumping), we headed back. Jr. had a much better afternoon. He was stable. Urine results were not yet in. The preliminary results on the spinal fluid were negative, but the final results would be available in a couple days after the lab checked to see if any bacteria grew. Blood culture would take 2 days as well.

It was time to change his diaper and bed linens, so one nurse had to hold him up while the other worked quickly. Sam was PISSED to be disturbed and boy did he let us know it. His face was a wrinkled in a fit of rage. After he got nice and comfy again, things settled down. We just hung out and held hands. There were times he gripped my finger so tightly, he must've been dreaming he was arm wrestling or something. At times, he opened his eyes to check us out. After his birthday at 9:08pm, I read him a story, a wonderful book called On The Day You Were Born, a gift from his Aunt Debbie. He seemed to really dig it.

Though we are sad he's had a set back, we are also relieved he's getting a break. He did so well for so long and he's just pooped. The nurse reminded us the overall picture will show a continuous climb on the graph, but it'll be a squiggly line with lots of dips. While we were there, we heard a stat request over head for a neonatologist to the delivery room of a youngster born with one kidney. Just heartbreaking. Things could be so much worse.

Amazingly, little Sam has already managed to snag a Gmail account. Wonder how he pulled that off?! I received this message from him in the midst pumping:

Hi Mommy,

I just wanted to wish you a Happy Mothers Day. It's our first one together and it makes me really happy to be able to spend it with you. Sorry I didn't get you anything.

I really appreciate you visiting me in the hospital. And I know it's been hard for you to see me like this and I wish I didn't have to be in here either. I want to be home with you all curled up on the couch snuggling.

I wanted to tell you that it means a lot when you come to see me. I really like it when hold my hand and talk to me. It makes feel like a very special boy. I'd give anything for you to hold me again.

Don't worry about me though. I'm doing all my breathing exercises and I'm eating all my TPN (it tastes yucky, blech) but the nurses are really nice.

I love you, Mommy. See you soon.

Love,
Sam

Now, if that doesn't bring you to tears, you're a robot! I cried my eyes out. Somehow, Sam managed to get a present after all. One mani-pedi and a card for Mommy!

Thank YOU, my beautiful Samuel for being such a strong boy with a fighting spirit. You're a warrior. Thank you for making me a Mom, your Mom. I will always be so proud you are my son. I love you so, so much