It's hard to believe it has been 1 year since Santi had the Fontan, his third open heart surgery. Santi has recovered beautifully from his surgery and his heart function is excellent. Words every heart family longs to hear. We are down to annual cardiology visits, which is also phenomenal for a young HLHSer. Santi's highlight to our (4 hour!) appointment, was getting this cool Hot Wheels car carrier. It certainly helped us get through the last hour of waiting around. We were sent home in a Holter Monitor (24 hour EKG) which is pretty standard. Santi will wear it for a day, then I mail it back to the doctor and they read his heart rhythms. My little trooper did great today and we are happy to hear his heart is doing well!
It's been so long since I've posted anything heart related, I kind of forgot this is an HLHS blog!
Santi's last open heart surgery (the Glenn) was NINE months ago today! (I can't believe it!) Our main goal after the Glenn was to keep him healthy. No colds, no flu, no cough, no hospital visits. And you know what? We did it! I don't know if it's luck or if it's because we are agoraphobic germaphobes but we managed to keep him healthy amidst a killer cold and flu season. YAY!
Yesterday we had an appointment at Rady Childrens Hospital in San Diego. He had a sedated echo cardiogram and a check up with his cardiologist. When we were first told that the echo would be "sedated" we were a little put off. CHLA never suggested that his echos be sedated. But honestly, it wasn't that bad. They gave him some cough syrup type sleep medicine orally. He cuddled up on me and dosed off in 9 minutes. I laid him on the table and they proceeded with the echo (an ultrasound of the heart), which took about 50 minutes. When it was over, we woke him up with tickles. We had one sweet little drunk money on our hands! I know its sad to see your kids medicated, but it was also really cute. He came out of the sedation very smoothly, no fussiness, no nausea. Then we met with the cardiologist to get the results.
The Doctor had good news, potentially great news and bad news. The good news is that his heart looks good. It's squeezing well, the valves have very little leakage and there was no mention of scar tissue from his surgeries. The potentially GREAT news is that his left ventricle is growing. (wait, WHAT?!) And because it's growing, he could maybe, possibly, potentially be a candidate for a bi-ventricle repair. AKA- WHOLE HEART REPAIR! Mind officially blown.
So until yesterday, Santi's path would have led him to the Fontan. The Fontan is commonly the third and hopefully final surgery most HLHS kids have when they are about 3 years old. But now we know there might be another option for him. We just have to be patient, do more research and see what they find in his next cath. Which takes me to the bad news.
He has to go in for a Cardiac Catheterization, soon. Like within the next few weeks. Remember what happened at his last cath? Yeah, our over night procedure turned into 14 days of IV antibiotics and an early Glenn! 27 days at CHLA.
Anywho, during the echo they saw some "collaterals," which are new blood vessels he doesn't need and could potentially cause problems. So they want him to come in for a cath to get the collaterals coiled and also to observe his heart function from the inside.
What a day! So much to digest and prepare for. After our appointment Santi was a little sleepy, but pretty much back to himself by bath time.
Our Sweetpea, Babylove is 6 months old. My oh my, has the time flown by!
It has been 8 weeks since Santiago had his second open heart surgery, the Glenn. We are thrilled at how fabulous he is doing. He is indeed THRIVING!
He had his first check up with his new pediatrician (in San Diego, yay!) today. He got the second round of his vaccines and he did so good. Yes, he cried, but just for a moment. He is such a trooper!
Santi isn't just thriving for an HLHS baby, he's thriving in comparison to healthy kids, the numbers don't lie.
Height 27.25 inches
Weight 17lbs 11oz
...and his big beautiful head is in the 88th percentile!
I must confess, my son is almost 5 months old and he doesn't have a nursery yet.
Once we decided to deliver in LA and have his first two surgeries at CHLA we knew he wouldn't be home (home) until he was about 6 months old. Sadly, during my pregnancy, I couldn't bring myself to even think about creating a space for him. HLHS is awful and lots of people lose their babies in the first few months. That's just the reality of it. I was afraid. I didn't want to do a nursery and then not have a baby to bring home to it.
But here we are, just two more weeks in LA, (6 months has never passed so fast)! Preparing to move back home to Carlsbad and our baby is nurseryless. Well, not completely. We've been in Carlsbad all week and the nursery is now underway. The furniture is set to arrive in mid September. Here's a sneak peek at where Mr. Santiago Banks will reside.
Can you believe it's only been 4 weeks since Santi had his second open heart surgery?! Look at this guy, he's doing fantastic. No oxygen, just one med, he's such a show-off.
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.
I'm so nervous, I cannot sleep. Santiago is having his first heart catheterization today. We check in at 8:00am. I'll post an update this afternoon.
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!
Every week we change Santi's nose cannula. For the few minutes it's off, we take as many photos as possible. I have this fear that he's going to have permanent indentions in his cheeks from the tubes. So when they're off I massage his little cheeks and give him a million kisses. I love this face.
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!
Santi has been home for a total of 48 hours and we are all doing great.
The first night was rough. The combination of adrenaline, no sleep, figuring out how to set up all of Santi's accessories in the most functional way and then needing to leave the house by 8am Friday morning for his first pediatric check up, left Abe and I very sleepy, but we did it.
Last night was much smoother. Abe and I both napped in the afternoon which made the overnight feedings a lot better. We changed Santiago's nasal cannula during bath time. While he was without oxygen, we hooked up his pulse ox so we could monitor his sats and heart rate. Santi did so great. He was without oxygen for about an hour and his sats were perfect, 79-83 and his heart rate was perfect too. Hopefully we can wean him off oxygen within the next few weeks.
Finally photos without tubes!
Having him home is the best. He is so sweet and cute and such a good baby! We are in awe of him, his strength and his charming personality. I truly believe that he can feel the love that all of you, our friends, family and even strangers have been sending him. We couldn't have gotten this far without all of your love and prayers. THANK YOU!
Please keep it up. We need to keep him healthy this summer until his next surgery.
On 4/12/12, after 20 days in the hospital, we finally got to bring our baby boy home!
Exciting? YES! Scary? OMG YES! Knowing that this little guys life is literally in our hands is so intense. More so than bringing home a healthy newborn. We have to make sure he's getting enough oxygen, enough food and that his sats (blood oxygen saturation) stay within his normal range (75%-85%). We were sent home with O2 tanks and a Pulse Ox monitor. He is on .25 of a liter of oxygen continuously and we check his sats 3 times a day.
When we told Santi he was coming home he was like, "oh my gosh you guys! Are you serious?!" Abe made a shirt to commemorate the special day.
We can't get enough kisses
Getting loaded into the car seat
Here we go! ByeBye CHLA!
Welcome home Santiago Banks!
Big sister Stella checking out her new brother
Enjoying the sights and sounds of his new environment
The photo on the left is from Monday morning and the photo on the right is from today. So, what's missing?
...his NG tube! The feeding tube that went from his nose to his belly was removed on Monday afternoon! Hooray!
He is eating like a champ. Taking 55-70 mL's every 3 hours. We are still working on nursing, but the majority of his meals are my milk fortified with a little bit of high calorie formula.
Feeding and gaining weight is the most important goal right now. Santi needs to get enough, by mouth, without working too hard to get it.
In an effort to keep up with Santiago's feedings I have stayed with him the past few nights nights. As a result, the blog has suffered (sorry!) but his feeding has improved everyday.
He eats every 3 hours starting at 12:30am then 3:30am, 6:30am and so on. We started nursing (or trying to) on Thursday afternoon. He did okay. He has pretty good suck and swallow coordination but he didn't quite "get it" at first. Which everyone assured me was normal.
I nursed him through every feeding on Thursday night/Friday morning. He was only taking roughly 10cc's from me, then he would be so exhausted he'd fall asleep. The rest, up to 45cc was given through his NG tube. That's the feeding tube that goes into his nose, down to his tummy.
On Friday our nurse rigged a "paci-trainer." Basically a pacifier with a tube and syringe of food attached. This was to help him put together the idea of sucking and getting the reward of food without having to work as hard as he does while breast feeding.
So we alternated breast feeding and the paci-trainer Friday night/Saturday morning. He did GREAT with the paci-trainer and a little better at nursing.
On Saturday morning he got a new nurse with a new plan. She wanted him to started eating from a bottle. I didn't love the idea, but the most important thing for Santi is that he gets my milk, by mouth and he gets enough of it. I have never fed a baby from a bottle, so I had some training. It started kinda rough, but overnight he really started to pick it up. This morning he finished his 55cc bottle in no time!
Since gaining weight is a major goal, my milk is being fortified with 24 calories of formula. I didn't love that idea either. But if he doesn't gain enough weight or learn to take his entire feed by mouth, the future alternative is a G-tube. A feeding tube straight through his belly. This terrifies me and we'll do whatever we need to to avoid a G-tube!
Santiago was moved to CV Acute yesterday!
CV Acute, also known as, "step down,"
also known as, "the place you go before you go home!" He is doing SO good that we got to do skin to skin yesterday and today.
...And tomorrow we get to attempt nursing! So far he's only had my milk but through a feeding tube. I've been warned that nursing can be very difficult with a heart baby. They get tired easily and hard time gaining weight. I won't get my hopes up yet, but I have a feeling he'll do just fine.
Santi is 1 week post-Norwood today! I hold my breath every time I say this, but...He's doing great!
WARNING: graphic photos
We were debating about posting these photos.
They are graphic and painful to see. But in the spirit of full disclosure and helping future HLHS families understand the reality of the situation, we decided that it's best to share.
3/27 - Day of surgery
3/28 - Recovery, Day 1
3/29 - Recovery, Day 2 - Chest is closed!
3/30 - Recovery, Day 3 - getting wiggly
3/31 - Recovery, Day 4 - reconnecting with Dad and the pacifier
4/1 - Recovery, Day 5 - First food ever and first post-op snuggle sesh with mom
4/2 - Recovery, Day 6 - just being a baby :)