Still at CHLA

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I can't really call this the "heart cath update" anymore. We're still in the hospital but it has nothing to do with his cath.

Santi had a really rough day yesterday. And last night was worse. He spiked a 102 fever. He was sweating profusely and he was completely inconsolable. The day nurses didn't do much. They gave him Tylenol and took his temperature. But didn't find the fever.

He was fussier than usual but napped and ate normally until 11pm when he woke up hysterical. The night shift took his temp 6 times just to make sure they were reading it right, yep, 102! We immediately tried to bring it down by cooling him off with cold towels and more Tylenol.

11pm-3:30am is all a blur. There was blood drawing, a catheter, IV's removed, IV's started, decreased sats, increased oxygen, lots of dirty diapers, about a million tears (from both of us) and certainly no sleeping. It was a nightmare. I'm sure all parents would agree that seeing your child suffer is the most horrible feeling. I'd trade places with him in an instant to make his suffering go away.

At this point they believe he has some type of gastrointestinal virus. We are waiting for blood and stool labs to come back and they've started antibiotics. He's also on Motrin and IV fluids. His sats have decreased to the 60's so he's now on 2 liters of oxygen. He was on .5 liter at home.

We are moving to CTICU in a few minutes. They will be able to put him on warm, high flow oxygen and watch him more closely.

When we came in Thursday morning for his cath I truly believed we'd be home by Friday afternoon. But I'm glad we didn't get discharged. Whatever he has was probably brewing before his cath and this would be even more stressful if it had surfaced at home and we had to bring him back thru the ER.

We'll probably be here for a few more days. I will keep you posted!


Heart Cath Update #3

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Soooooo, we're still at CHLA.

First of all, Santi is doing great. We're still here because they wanted to make sure he got the full 24 hours of therapeutic heparin. They stopped the heparin around 3pm today and now they want to watch him overnight to make sure he'll be okay without it.

His right foot still has a weak pulse and it is cool to the touch. But the color is good and the doctors don't seem too worried about it.

I'm 99% sure we'll go home tomorrow. I have been inside this hospital since Thursday morning and I'm really looking forward to seeing the light of day again. But mostly, I'm looking forward to taking Santi home and just being home with him and Abe.

Being in the hospital is the worst. I believe that there is a point when being here stops helping you recover and starts hindering your recovery. My poor baby never gets to sleep more than 3-4 hours in a row. There are constantly people coming in to draw blood or take his vitals. Everyone is noisy and they carelessly flip on the bright lights in the middle of the night. My patience with the nurses has worn very thin. I have a TON of respect for nurses. I could never do what they do. But out of all the nurses I've come in to contact with here, very few seem to be any good at it. By "any good," I mean passionate, caring, devoted and mindful of their patient. Most don't even seem to acknowledge that babies are human beings with feelings (and sleep schedules!).

Anyway, I'm tired and cranky and I'm rambling. I want my baby Santi to go home. We'll be back before I know it, doing this all over again after his Glenn. Sigh...

Heart Cath update #2

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Guess what....we're still here and we'll be staying another night :(

They increased his heparin dose this morning. The dose they started yesterday wasn't enough and he still barely has a pulse in his right foot. They want to watch him over night to make sure the heparin works.

He was off of oxygen for 30 minutes this morning with sats ranging from 75-79, which is pretty good for him. But then they fell to the low 70's. Now he's on .25 liter of O2.

So now the question is, why is he still dependent on O2 even after they opened up the narrowing in his aorta? Dr. Takao believes that he's outgrown his shunt. He weighed in at 13.4 yesterday! So, that means he'll have the Glenn sooner than later. We are scheduled to consult with Starnes on 7/9 to set the date for the Glenn.

Heart Cath Update

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It has been such a long day! Santi couldn't eat after 5am, so I was up at 4:30am to feed him. He downed all 6oz of his bottle and went back to sleep until 7:20am when I woke him up to leave. We checked in to CHLA at 8:00am, waited in a couple of pre-op rooms until he was finally taken into surgery a little after 10:00am. Despite being hungry, he was smiley and charming and waited patiently. I swear he even flirted with Dr. Takao when she came in to brief us on the procedure.

Abe and I waited with his parents. Around 1pm Dr. Takao came out and told us everything went great. As predicted, she found scar tissue causing some narrowing in his aorta. She was able to open it up with a balloon, no problem. The cath also showed that his atrial septum is slightly smaller than it should be. It's not an urgent fix, but when Santi comes back for his Glenn they'll remove some tissue and open it up. We will know the date for his within the next few weeks.

Once Santi was in recovery they noticed that his right foot lost its pulse. This is common (apparently) following a cath. They put him on a blood thinner to break up the small clot thought to be causing a blockage. It's been a few hours, he's still on the blood thinner and a weak pulse has returned to his foot. But his leg is still a little cold to the touch.

Overall, everything went better than I anticipated. The worst part is waiting. We didn't get to see him until after 3pm. He was sleepy and groggy, definitely not himself. We were taken to his room in CV Acute around 6pm. The nurses are going to try to wean his oxygen over night...fingers crossed we get to go home tomorrow without O2!

It is so hard to see your baby in the hospital, even for a day. Especially now that he likes to move around so much. I know his Glenn is right around the corner. Abe and I really need to get mentally prepared to help him through it. But honestly, nothing can prepare you for sending your baby into open heart surgery.

Doing his nights

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Wanna guess what this is?

These numbers represent time.

They represent hours.

More specifically they represent the hours in which Santi has slept over the past three nights. Oh my goodness...can you believe it?!

At his check up on Monday I asked his Cardiologist if it was okay to let him sleep. That sounds strange but I was previously instructed to make sure he ate every 3-4 hours, 24 hours a day, to prevent dehydration and make sure he gained enough weight (dehydration + HLHS can = death!). Well, our hungry hungry hippo now weighs 12.8lbs and he's almost 24 inches long! He's in the 50th percentile...for a heart baby that's HUGE! So anyway, she said "YES, let him sleep" and guess what? He is sleeping SOOOOO GOOOOOOD! I'm still nervous that this is a fluke, but three nights in a row is pret-ty good.

His bedtime routine used to go like this: 6pm bath, 6:30/7ish bottle & swaddle, 7/8pm bedtime. Then, I'd wake him up at 11pm/12am to give him his nightly meds and one last bottle and he'd sleep until 6 or 7am (I know thats more than 4 hours, but my motherly instinct told me that we both needed to sleep). He was getting 8-10 hours of sleep, but it was interrupted sleep.

Monday night I put him to bed at 8:15pm and I was sure he would wake up at 11 or 12 wanting his bottle. But he didn't. And you know why, because I used to wake him up for that bottle...I woke him up, he didn't wake up hungry, I would wake him up! Crazy. Little Sleepy Santi didn't wake up until 7:40am on Tuesday. And when he woke up, he woke up happy! Happy that I finally left him alone to absorb the benefits of getting 11 hours and 23 minutes of uninterrupted sleep. The funny thing is that I slept horribly on Monday night. I woke up every couple of hours in anticipation of him waking up.

Tuesday night we were a little off schedule and I didn't put him to bed until 9:08pm. Because I was late putting him down, he was overtired and fussy. Had I put him down earlier, like 8pm, his usual bedtime, he probably would have fallen asleep faster and without being fussy. Tuesday night Abe and I decided to try something outrageous, we slept in another room for the first time since Santi came home from the hospital. We have two baby monitors, the motorola video monitor and the AngelCare motion monitor. The AngelCare is so sensitive it monitors breathing. If he were to stop breathing for 20 seconds an alarm would sound. Armed with this technology we both slept great. In fact, we all slept great.

Last night I put him down at 7:57pm, (Abe and I slept downstairs, Santi slept upstairs) and I didn't hear a peep until 7:20am.

Another great thing about this sleep schedule is that when he wakes up in the morning, he gets a fresh diaper and a big bottle (he's eating 5+oz now!) and then he goes back to sleep for another hour or so. It's amazing. He continues to have great naps during the day and when he's awake, he's calm and alert and smiley and charming. Santi is a well rested, cutie-pie, sweetheart.

Now listen, I'm not SuperMom and he's not SuperBaby (and goodness gracious it's only been three days! this could all fly out the window tomorrow!). 3 months ago I didn't know squat about sleeping babies. There are only two books (and common sense) that have taught me everything I know about getting my love to sleep through the night. I started reading "Healthy Sleep Habits, Happy Child" while I was pregnant and actually had time to read. I really like it, but I haven't finished it. And just last week a friend recommended "Bringing Up Bebe." I'm only a few chapters in but I LOVE it and I've learned so much already. It's about an American woman and her British husband raising their kids in Paris. In France, parents don't ask each other "how" their babies are sleeping at night like Americans do. It is expected and very common that by 2-3 months old the babies are "doing their night," meaning sleeping through the night.

This post is getting a little long for my taste. So, with respect to your time as my reader, I'll blog about my current reading material next time, because I have a lot to say about these books.

 

Cardiology Check Up

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As you may have noticed, Santiago is still on oxygen. Most heart babies do not come home on oxygen. It's more common for them to come home with a feeding tube. We are very lucky that our little love is a good eater and has not had any gastrointestinal issues. The oxygen tanks are a nuisance and I hate that his cheeks are raw from having tape on them constantly, but I know this is temporary and we can get through it.

We have had many discussions with Santi's cardiologist about the oxygen and why he's still dependent on it. She thinks that there could be some narrowing in an artery, however, until today his echocardiograms didn't show any. At our appointment today she compared his echo with the one they did 4 weeks ago. She was able to see that there is a very slight narrowing in the aorta where it connects to his shunt. This is most likely scar tissue.

Next week, on 6/21, Santi will have his first heart catheterization. During the heart cath, they will enter through the artery in his thigh and and follow it all the way into his heart with a scope. They will use contrasting dyes to really check out his heart from the inside out. If they see any narrowing or scar tissue they will use a balloon, like angioplasty, to expand the area. This procedure is "minor" but it's still scary for us and there are risks. If all goes well he will only spend one night at CHLA.

If the cath shows that his heart is in great shape, he will have the Glenn (the second of the three planned surgeries) 1-2 months from now. If things don't look great, they'll do the Glenn a lot sooner.

So, if his oxygen dependency is because of some narrowing in an artery and they are able to open up the narrowing during the cath then he MIGHT be off the O2 a few days after the procedure. Fingers crossed!

Music & Friends

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We went home to Carlsbad for what was suppose to be a few days and stayed for a week and a half! There truly is no place like home!

While we were there I took Santi for his first trip to the beach. I met up with my lovely friend Anika and we did our usual walk down the coast in Cardiff By The Sea. I forgot to take a photo (mom fail) but trust me, he loved it.

We also learned that Santi LOVES the guitar. One morning he was being a little fussfuss so Abe grabbed his guitar and started to play. Santi froze in silence. He was mesmerized. It was so cute. To make sure it wasn't a fluke, we tried it a few more times and every time he was just captivated by the music.

Santi also met his first baby friend! Sweet Penny Rae is just six weeks old. She was stylin' in her Orbit stroller. Her mom Tina, my bestie Melissa (who's due in August) and I met for lunch at Sammy's. Both babies did great, no fussing or crying. Just sweet little angel babies.

I heart running

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This time last year I was getting ready to run the San Diego, Rock N Roll half marathon (13.1 miles). And two years ago I was preparing to run the full (26.2 miles!) SD Rock N Roll marathon. When I think about running those races, it blows my mind. Before I did the marathon I was not a runner. I became a runner when I spent 6 months training for the marathon. In the process of training, I fell in love with running.

Running a marathon was great preparation for labor and delivery. They both test your endurance, pain tolerance and focus. But, let. me. tell. you...mile 25 in the marathon was party time compared to that one hour of pitocin contractions I endured. In fact, I'd rather run a marathon, barefoot, over broken glass then have another pitocin contraction!

So anyway, It's been 9 weeks and 2 days since I gave birth and this morning when I woke up I thought...maybe I'll run today. I set the intention, but I was scared and I had totally irrational fears; What if I couldn't do it? What if my body forgot how to run? But then I thought, the only way I can ever get back to running is to start running again.

I fueled up with half a packet of Gu and I left the house. I started with a warm up hike to the Hollywood Reservoir (.8 miles from our house) thinking I'd aim for half a mile or so once I got up there. When I reached the top, I turned on my "running" playlist and hit the road. It felt good. Understandably, my body felt different. My knees, hips and ankles could feel the extra weight I'm currently carrying. But guess what? I didn't forget how to run! Running felt so good that I surpassed my half mile goal and ended up running 1.16 miles. Not a marathon, I know, but it's a start. And more importantly it's enough to build my confidence to keep running. Hey, maybe I'll even train for another marathon...

Sweaty and Happy!

 

Pump it up

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You have no idea how happy this makes me. When I open the fridge and see a row of bottles filled with breast milk I just jump for joy, it makes me SO happy!

Our hungry hungry hippo is now tipping the scale at 11.7lbs and is consistently eating 4+ ounces every 3 hours during the day. With his steady weight gain, we no longer have to fortify any bottles with formula, hooray! Just mom juice for Santi. So that means I have to make more milk than ever to guarantee he can eat.

It's amazing how the universe gives you exactly what you need, exactly
when you need it. After a few scares of my milk production decreasing, I'm finally making enough to be several feeds ahead of him and freeze some for later.

I'm sure I'm not the first person to have milk production issues. I have seen 5 lactation consultants over the past 2 months and I've learned so much. Here are my tips to keeping and boosting your milk production if you're pumping, but I'm sure these work for nursing moms too.

  • Pump, pump, pump! Nothing can substitute or stimulate more milk production than pumping 8-10 times a day. The lactation consultants will tell you this from day one, you'll try to find a short cut but there isn't one. You MUST commit to pumping. Make it your job, make it your biggest priority!
  • For heart moms: When Santi was in the hospital I took a few short videos on my phone of him crying. When I'd go home at night I'd watch the videos while I pumped, I called it "pumping porn," it helped so much. Just hearing your little love cry will get the milk going.
  • Use a hospital grade pump. Rent one from the hospital or buy one, check eBay! Getting the Medela Symphony was a game changer for me. It has made the biggest impact on my production. Yes, a hospital grade pump is expensive, $1500 if bought new, but a year on formula is even more expensive $2500-$3500+.
  • Most pumps have two modes, first it stimulates for 2 minutes then it switches to the stronger suction. As soon as it switches to the strong suction turn up the suction until it hurts then take it down one notch. This is advice from an LC and it works great!
  • Use the second "let down" feature on your pump.
  • If you're nursing, use your pump after you feed your baby. This tells your body that the baby is still hungry and you need to make more milk.
  • You can take Fenugreek, Mothers Milk pills and drink lactation stimulating tea, but don't rely on it. Remember, nothing can substitute for actually pumping.
  • Take care of yourself! Stay hydrated, eat enough calories and get rest when you can. I usually eat a snack and drink 20oz of water while I pump and another 20oz when I'm done. Plus, I just drink water all the time anyway. As much as I want to lose the baby weight, I do not restrict calories at all. Feeding my baby Santi more important. Sleep when you can. Sometimes I'm in bed as early as 8 or 9pm, depending on his schedule. Because I know I'll be up with him again at midnight and again at 4 or 5am.

Gosh, I've learned so much! This is probably TMI but I just pumped a record amount while writing this, 5oz on each side for 10oz total, holy moly! So maybe thinking about producing a lot while you're pumping works too! 

Mr. Tough Guy

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We took a trip to the pediatrician today and this guy got his 2 month vaccines. He got 3 shots total, 2 in the left leg and 1 in the right. Abe and I were so nervous for him, but he did great! Yes, he cried, but just for a second. Then he fell asleep. He is so tough!

His check up went really great too. He is jumping up in higher percentiles for weight, length and head circumference. Overall, he is healthy and growing and hitting his milestones.

How cute is his custom onesie? It's one of many pieces that Abe made for him. He is the luckiest baby to have such a sweet, creative father.

 

Dear Santi,

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My Little Love,

You are a little magician. You make time disappear! Where have the past eight weeks gone?!

It amazes me how much you have changed since my last letter. My favorite of all the changes is your smile! You respond with a smile when we smile at you. You particularly love it when we stick out our tongues, sometimes you even mimic us and stick your tongue out at us! You have the sweetest smile, you even smile in your sleep. Oh my happy baby, I love you so much.

You are also full of cuddles and coo's right now. After you eat you like to snuggle up and gaze at me. It just melts my heart. I sing to you all the time and I'll continue to do so until you're old enough to complain. Even then, I'll probably still sing to you. Over the past couple of weeks we listened to Jimi Hendrix, Jason Mraz, Jack Johnson, Kate Nash and of course, the Beastie Boys. Music makes you so happy.

On April 30 we took you home for the first time. Like HOME, home, to Carlsbad. We stayed for a week and it was such an eventful trip. It marked your longest car ride and mommy's first beer since before I was pregnant. Those were on different days of course.

At your last doctors visit you weighed 10.9lbs and you were 23 inches long. You are so big and healthy! Your eyes are still blue and your hair is outrageous.

Everyday you sweep us off our feet, making us fall head-over-heels in love with you over and over. And it never gets old. We adore you.

Love,
Mama

 

Chubster

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A lot of heart babies have trouble eating and gaining weight. That is the main reason I have to fortify most of his bottles throughout the day. I need to make sure he's getting enough calories.

At Santi's doctor appointment last week, he really alarmed his doctor with his weight...and not because he's not gaining enough. They're worried he's gaining too much! Can you believe it?! He gained a pound in the week and a half between his appointments. This concerns them because if he gains too much, too fast his heart will have to work even harder to support his bigger body.

On Monday we met with a dietician. She told me to only fortify 2 bottles a day from now on, preferably from my morning pumping session. Why from the morning sesh you ask? Because your first pump of the day yields the most milk, yet the lowest calorie milk...who knew. 

His next appointment is on 5/23, we'll see if we can slow his roll a bit. By the way, How insane is his hair? It's out of control!