Wednesday, October 19, 2016


Helena had her 15 month well baby checkup today.

She is in the 40th percentile for weight. Her pediatrician said he's no longer worried about her weight, and said we can make the switch to milk from formula once we use up what we have left.

Take a moment, and look at that growth chart. It's also missing time she was in the 3rd percentile. Not long ago, she was barely on the growth chart and today she's in the 40th percentile. She hasn't been that high since she was born. This is the highest percentile she's been in since birth.

For Helena to get into the 40th percentile and both her cardiologist (who I sent the pic of her chart to immediately) and her pediatrician to say they're no longer concerned with her weight... Well, it's amazing.

The struggles we endured to get her here were tremendous. Months of NG tubes, oral aversion, puking... I would beg her to just eat. I didn't even care what - candy, juice, sugar, cookies.. Anyything. I would have gladly given her a bottle of Kool-Aid if she would have drank it. You take for granted that your kid will want to eat, to have to face the horrible reality that putting anything in her mouth makes her gag is terrifying.
Just back in March, she was fully dependent on the NG tube for all of her feedings, and was barely on the growth chart. She was puking up more food than she was keeping down. I was obsessively weighing her on a daily basis, hoping for any increase, no matter how small. I would celebrate even a one ounce gain, but more days I would stress about a loss. Even just maintaining her weight was a sort of victory. Our days were stuck inside, covered in puke and we were all miserable. I'd have to restrain her and shove a tube up her nose multiple times a day, only to have her pull it out, or worse, puke it up. As awful as it was for us, I can't even imagine how horrible she felt.

I honestly didn't believe we'd get to where we are today. We were weeks away from setting up a g-tube surgery when Helena finally was able to eat orally. After her surgery, I was convinced that she would regress back to needing the NG tube, but she surprised me. When her nurses told us that she took 6 ounces of Pedialyte from a bottle after her surgery I cried with relief.

I cried with relief again today when her pediatrician told me she's in the 40th percentile. It's just something I never thought would happen. I almost didn't even let myself think that it could happen so I wouldn't be upset when it didn't, if that makes sense.

Today, Helena is thriving. She'll eat anything we put in front of her, and will even try to steal food from us. She's not only eating orally, she's enjoying eating. She's gaining weight, and she's progressed so much. She's like a different baby than the one we knew just a few months ago.

She's cruising, sitting, crawling, and is getting closer to walking every day. She's learning and using more and more baby sign language, and is saying "da-da" and "ma-ma". She's curious and loves exploring her world and trying new things.

New things like bounce house slides

I'm still going to weigh her on a fairly regular basis, and I'm sure I'll always be concerned that she's not gaining enough, but for now, she's ok. She's ok. We did it. We got her to a place where she's eating successfully and is able to not only maintain, but increase her weight. We got her to place where she's not just surviving, she's thriving and loving life. She's just so happy, and we can't even express how much that means.

Thursday, July 14, 2016

The Difference a Year Makes

A year ago, I went in for an NST and ending up being induced and having our special little girl.

A year ago, we didn't know what would happen to Helena when she was born. We didn't know if she'd be born blue, if she'd be able to breathe on her own, or if she'd need surgery right away.

A year ago, we had no idea we'd spend months battling feeding tubes and reflux and fighting for every ounce our little girl gained.

A year ago, I didn't know what oral aversion is.

A year ago, I never thought I'd be an expert at dropping an NG tube or programming a feeding pump.

A year ago, we didn't know how to work a pulse-ox machine, or how to read an EKG, or what a normal baby's blood pressure should be.

A year ago, we didn't realize that not only would we be getting speech therapy, but also physical and developmental therapy to help our little girl catch up.

A year ago, we never could have imagined how loving, careful, understanding and adaptable our boys could be. Or just how much they too would love their little sister.

A year ago, we weren't even really sure what was wrong with Helena's heart.

A year ago, we didn't know when she'd have to have corrective surgery, or even what that corrective surgery would be.

A year ago, we didn't know how much love, support and care all of our friends and family would shower on us while we went through one of the hardest times in our lives.

A year ago, we had no idea how much we'd come to love this little girl, and just how scary it would be to hand her over to her medical team so they could fix her heart.

A year ago, we had no idea how incredibly grateful we would be to the doctors, nurses and everyone else who helped fix her broken heart and get her to where she is today.

A year ago, I couldn't even think about Helena's first birthday party because I was so scared she wouldn't be here for us to celebrate it.

A year ago, we weren't able to hold our new baby.

A year ago, we didn't know all the challenges this little warrior would face, and eventually overcome.

A year ago, we didn't know how long she'd be in the hospital. We didn't know we were looking at a month-long stay.

A year ago, she was sedated and intubated while we figured out what our gameplan for her would be.

Today, Helena turns a year old.

Today, Helena is babbling like crazy.

Today, Helena is army crawling anywhere she can.

Today, Helena is eating not only her formula, but real people food too - and loving it!

Today, we no longer have a feeding pump or a pulse-ox machine in our house - because we don't need them.

Today, Helena is making huge progress in all areas of her development and no one has any concerns that she will one day soon be caught up to her peers.

Today, her brothers love her even more than they did when they first met her.

Today, Helena has a mended heart.

Today, we cannot begin to express our gratitude to everyone in our lives who showed their care, concern and support during the last year. Without it, this hard year would have been even harder.

Today, our medical team is more like family. Our gratitude to them knows no bounds and we can't imagine not having them in our lives.

Today, Helena is snuggling and loving and wants to be the center of everyone's attention and love - and she often is.

Today, she is happier and healthier than I could have ever imagined.

Today, we are home as a family of five.

And today, we celebrate this little girl's life.

Happy Birthday Sweet Girl, you are so very loved.

Tuesday, April 5, 2016

Adios Tubie!

Goodbye NG tube!!

As of this morning, Helena is officially gaining weight even without the night time NG feedings! We've gotten the all clear from her cardiac nurse, her pediatrician and her nutritionist to cut it out completely! It's amazing to think that in less than two months she's gone from completely NG tube dependent to totally off it. It's been a long, stressful two months full of scales and weight checks and food logs, but we've done it!

She's so happy without that damn tubie!

I can't even express how happy and excited I am about this. It was my long term, super reach, thought it was unattainable dream goal to have her eating orally 100% by surgery and we've done it! I honestly didn't think it would happen, but with the care and dedication of our team we did it and we're just all so happy!

Celebratory mohawk. As you do.

Everyone tells me that if a baby goes into surgery eating orally, they go home eating orally; but because I'm weirdly superstitious about these things I'm not packing up her NG supplies (which of course, I just reordered before we started the no NG at night experiment) until we're home and doing well. I don't want to jinx our progress, but I'm optimistic that we won't be needing any of it anymore.

Since coming off the NG tube Helena is a completely different baby - she's rolling all over, sitting up better, babbling more and more each day and is just so much happier. She's curious and wants to explore her environment and is getting frustrated that she's limited by her low muscle tone and inability to crawl and sit up on her own.

She still manages though. 
"What is this thing on my counter?"

"A cord! A cord!"
Why do babies all have a fascination with cords? Or is that just ours because my Husband is a giant electronics nerd/hoarder?

It's hard to believe by looking at her that she's going in for major open heart surgery in less than a week. She looks great and if you didn't know better you probably wouldn't guess there was anything wrong with her. Her oxygen levels have been in the mid 80's, which is right where they should be for her. While she needs the corrective surgery, she doesn't need it right now. We're choosing to do it now because she's doing so well.

Monitoring her O2 levels has become a bit more challenging...

For me, this is both good and bad. It's good because she's strong and healthy and bigger and in a good place right now to undergo such a serious operation and hopefully bounce back quickly. Because she's doing so well we're all hoping it will lead to an easier recovery.

It's bad because she's doing so well! Of course after surgery she'll be on restricted activity (as much as you can restrict a 9 month old) and we do expect some regression which sucks because she is doing so well right now, and developing new skills every day. That most likely won't be the case for a few weeks post-op, which is totally normal of course, just unfortunate.

So until Monday (Surgery Day), we're trying to pack on the pounds, and just enjoy our "normal" as much as possible. 

Yes, I'm kinda freaking out and emotional about the whole thing, but no, I do not want to talk about it. I appreciate all the offers and support, but I prefer to live in denial until it's actually happening, thank you very much. 

It's funny how differently we handle things - I think this week is so much worse because my imagination runs wild with all the horrible things that can happen and I don't like waiting or the unknown and I'm a nervous anxious mess. My Husband thinks next week will be much harder when we're in the hospital dealing with whatever might happen, but for me, that's easier. I can deal with what's happening, wondering what will happen is so much worse for me. 

What's also funny is that My Husband wants to know everything and I want to know nothing. We met with her surgeon again, and he went through the surgery in detail. This brought My Husband comfort. It totally freaked me out. But on the plus side, this was the first time I've met with our surgeon and not burst into tears like an emotional lunatic so that was positive. I managed to hold it in until we were in the elevator this time. I swear, there is something about that man that both brings me comfort that he'll take good care of her and yet makes me sob uncontrollably. He probably thinks I'm nuts.

We have Pre-Op on Thursday where she'll go through a physical, blood draws, EKG's, echo's and probably more. She's going to hate it, but it's necessary. Then Monday is our big day. 

I'm not a hugely religious person, but as the saying goes, "There are no atheists in a foxhole" and well, we're in a pretty big fucking foxhole right now. I'm reaching out to any and all options that might play a role in helping our little girl through this. On Monday, any thoughts, prayers, positive vibes that you want to send our way would be greatly appreciated.

Wednesday, March 23, 2016

Too Tired for Target

Sometimes, when you feel like you kinda got your shit together your kids will make sure to remind you that you don't. Like yesterday.

My Guys are usually very well behaved when we're in a store. We've never had to abandon a shopping trip due to their behavior... Until yesterday.

My Guys are in school (preschool and Pre-K), and normally they get done at noon. This month they're in an enrichment cooking class that has them going until 2:00. This is a long day for them, and they are more tired than usual when they get home. I'm not making excuses for shit behavior, I'm just setting the stage.

So yesterday, I had told them that while the babysitter was here watching Helena, I'd take them to Target to buy some Easter decorations. We're hosting Easter at our house this year, which was a bit of a surprise, but it means that we need to decorate for the festivities rather than just leaving my husband's birthday decorations up until My Little Guy's birthday.

My Guys come home from school, and play outside for a bit until the babysitter arrives. I then load them in the car and everything seems normal. We get to Target. My Big Guy keeps trying to go in the out door, and I have to yell at him to stop because he's going to get hurt when someone is actually exiting and it swings open. This is unusual behavior for him.

We get inside and he asks if he can ride in the cart. I'm like, dude, no. You're almost 6. Walk your ass around the damn store. He whines that he's tired. Tough it out, you're not riding in the damn cart.

We make our way over to the Easter section after grabbing a few other items and as we get into the aisle, My Little Guy immediately loses his shit and starts crying. I ask him what's wrong, and he points at this horrible pre-made Paw Patrol Easter basket and says he wants it but he knows I won't buy it for him (he's correct).

Let's just pause here for a moment to discuss how awful fucking Paw Patrol is. I hate that shit. First of all, what the crap is wrong with all those people in that town that when they have an issue their first thought is to call that weird kid who doesn't seem to have any parents and his fucking DOGS?? That just doesn't make sense. Everything about the show is annoying. Everything. I want to punch that Ryder kid right it the face after I mess up his stupid hair. Secondly, with the bazillion items of merchandising they have created for this stupid show, would it kill them to put Skye on any of it? I've seen her on some of the "girl" toys and clothes but she's almost always missing from any of the boy stuff. My Guys have, on more than one occasion asked why she's not on their stuff and I have no good answer. I mean, I'm not one to get all riled up over feminist issues, but why do you have to cut the girl dog out Nickelodeon? That's crappy. And another reason I hate Paw Patrol.

Ok, back to the story. So My Little Guy is losing his shit over this stupid Paw Patrol Easter basket and while I'm talking to him about this, My Big Guy takes the opportunity to just straight up lay down on the floor in the middle of the aisle at Target. You know, as you do. I calm My Little Guy down and turn and see this nonsense and ask My Big Guy what he's doing. He replies that he's tired, and I won't let him ride in the cart. Yes. It's clearly my fault that you're laying down in the middle of Target. Sigh. I tell him to get up and that's it. We're done.

I fully abandoned the cart in the aisle, took them each by the hand and walked out of that Target. I get them in the car and basically ask them what the crap was going on in there. They really didn't have any answers other than saying how tired they are, and asking to go home to lay down. I mean, ok, I guess if you're so tired that laying down on the nasty-ass floor of Target seems like a valid option you're not just saying that. Clearly this trip to Target was a mistake as we were totally THAT family with the melting down kids walking towards the door.

I got them home, showered and fed and they were both half asleep on the couch before 7:00. They weren't lying.

So today, while they're at Tae Kwon Do, I'm off to the party store to hopefully buy some damn Easter decorations in peace. And without anyone laying on the floor.

Friday, March 11, 2016


I've sat down and tried to write this update about 10 times now and it's just not coming out the way I want it to, so I'm just spewing it out and hitting publish and being done with it.

We've scheduled Helena's corrective open heart surgery. She will go in for a pre-op check on April 7th, and then on Monday, April 11th she will go in for her Rastelli procedure (do your own damn Googling).

We're in a great place right now where she's getting about 90% of the calories she needs orally, and we're still making up the difference using her NG tube and feeding pump at night. We're still giving her a ton of food at night because eve with her weight gain (2 lbs in a month!) she's still underweight, and now with surgery scheduled we want her to be as fat as possible before then.

She's healthy, she's happy... You'd never know there was anything wrong with her if you saw her. She's smiley and has started rolling and is kinda sitting up on her own a bit. She's doing great. That's part of the reason we scheduled the surgery - she's healthy and strong right now, and she's a good size so let's get it over with.



As terrified as I am, her medical team is excited. They all think she's going to do great and come out of surgery even better than she is now. I take comfort in their confidence but I'm still an emotional wreck just thinking about it.

As my husband said, this time around will be both much harder and much easier.

It will be easier because we know her. She's tough. She's feisty. She's a fighter. She's handled every challenge beautifully and done better than anyone had hoped she would. Most babies need their corrective surgery well before six months. Helena will be almost 8 months old when she has hers, and even then she doesn't need it at that time as much as we're choosing to do it at that time. Her oxygen levels are still great (granted she hasn't been growing so she hasn't outgrown her shunt, but still). She's battled a couple colds like a champ. She's a tough cookie.

It will be harder because we know her. When she went in for her shunt surgery she was in the crib in the NICU and we had hardly held her, and she was only two weeks old. Of course we loved her and of course we were scared and worried but now that she's 7 months old, we KNOW her. We know her personality. She's not just a tiny little newborn blob, she's Helena. Handing over Helena for open heart surgery is almost unbearable, and yet it has to be done. She needs to be fixed.

So until April 11th we're just doing business as usual. We've planned My Little Guy's 4th birthday party (the surgery team was wonderful enough to accommodate us in waiting until after his birthday to do Helena's surgery so that he can have a normal birthday), we're attempting to get as many calories in Helena every day we can, and we're working with our therapy team to get her as strong and close to her age development-wise as possible, knowing that she will probably have some regression post-op. She will also have movement restrictions on her until her sternum heals again, so we're doing as much as we can now knowing we're looking at a few miserable weeks of healing down the line where she won't be allowed to move around the way she has been.

It's scary, but at the same time I'm glad that it's scheduled and that it'll be done and we can maybe have a semi-normal summer. As much as I'd love to put off surgery forever, getting it over with is good too.

We thank you all again for all the love and support and your kind words, thoughts and prayers. We're so lucky to have such amazing and understanding friends and family and we truly appreciate it all.

Tuesday, February 16, 2016


Look at this girl with no tubie!

So we've started doing a new thing with Helena to help her get off that stupid NG tube. We pull the tube during the day, and at night we put it in and using our fancy new feeding pump, we give her a ton of food super slowly throughout the night to make up for what she doesn't get during the day. It's been a rough couple of days adjusting to this new routine, but she's now taking 1-3 oz of formula at every feeding and eating baby food three times a day.

Mmmmm, apples

After a month of no weight gain, and pretty much puking up half of every meal we gave her through the tube we decided something needed to change. So under the guidance of her pediatrician and cardiologist, we engaged in what I lovingly referred to as "Starvation Therapy". We pulled the tube out and offered her the bottle and the food and nothing else for 36 hours. It sucked. She lost a ton of weight, she was cranky and hungry and miserable and it felt awful to know that she wasn't happy. BUT. But at the end of the day she took 3.5 oz from her bottle. She finally made the connection that hey, this bottle isn't going to hurt me, it's going to give me food and make my tummy feel good. I like this. She finally made the connection that the spoon isn't scary, it's got delicious baby food on it (gross) and it tastes better than my formula and also fills me up. Once she made that connection we started doing the tube/pump at night and she's been gaining weight ever since.

In less than a week we went from taking nothing orally to getting a fair amount of formula in her, and eating three "meals" a day. In less than a week we went from her crying and turning away from the bottle/spoon to her opening her mouth in anticipation of them.

Without that tube in, she's a new baby. She's so much happier and vocal and moving more. And, best of all, she hasn't puked once since we started this. I'm doing like 1/4 the amount of laundry I was doing before we started. 

She's still getting the majority of her nutrition from the feeding tube at night, but she's making great progress in taking more and more orally. And we're so happy to see her pretty little face without that tube all day.

Tuesday, February 2, 2016

CHD Awareness Month 1 & 2

February is Congenital Heart Defect Awareness Month. I'm sure I've spammed you enough that now you know that 1 in 110 babies is born with a heart defect, making it the most common birth defect.

I didn't know that until Helena was diagnosed, so I'm guessing you didn't either.

In honor of CHD Awareness Month, I'm going to post following the Mended Little Hearts prompts - one for each day.

Today I'll cover February 1st (Diagnosis) and February 2nd (Surgery/Meds/Intervention).

Diagnosis. Oy. Well, as I've written about before, Helena's diagnosis came at our 20 week ultrasound. We went in assuming that everything was fine, and already knew she was a girl. When the ultrasound tech goes from super chatty to super quiet and spends a great deal of time on your baby's heart you know something is up. She left the room, saying that the doctor would be in shortly to go over everything with us. When the doctor came in, he immediately told us that there was something wrong with the baby's heart, but that he wasn't sure what. Luckily for us, the pediatric cardiologist was at the hospital that day and agreed with meet with us immediately. He took a look and said he wasn't sure what was going on because she was small and moving too much. When we went back four weeks later, he confirmed that she does have a TGA with pulmonary stenosis, and a VSD. We've also learned that her coronary artery is in a weird place, because why not?

What's weird about getting Helena's diagnosis is that neither My Husband nor I were shocked by it. I cried. We were upset and sad and scared, but we weirdly weren't shocked by it. I'm not sure if it's because that's just how we are - we see the hand we're dealt and we immediately figure out how to play it, or if there was something else going on. But we weren't shocked, which is weird.

I feel lucky that we did get a diagnosis so early. We were able to monitor her throughout my pregnancy and make sure she was growing and developing well. We were able to switch hospitals so that I could deliver at the hospital with the best pediatric heart team in the are. We knew. We knew she had a serious defect. We knew she wouldn't be coming home with us. We knew there was a lengthy NICU stay ahead of her. We knew it was going to be rough. We had time to come to grips with the road ahead of us, and to prepare ourselves and the boys for it. We were able to get our support network in place. We were so very lucky.

We were lucky that we had a great ultrasound tech, and a doctor who realized something was wrong. We were lucky that our amazing cardiologist was on the floor that day and that because he's amazing he agreed to take time out of his day to meet us when we didn't have an appointment. We were lucky to live 30 minutes from the best hospital for Helena. We were just so very lucky. I couldn't imagine thinking everything was fine and delivering her and wondering why she was turning blue. It was scary enough as it was, with us knowing as much as we did. I can't imagine the parents who aren't lucky enough to find out about their baby's heart defect before birth.

Surgery/Meds/Intervention. Sometimes the though of everything Helena has gone through in her little life blindsides me and I just completely lose it. No baby who's only six month old should have had to be put under and cut open. No baby should have to get scared anytime she's naked on a table with a stranger because she already knows bad things happen to her when that's the situation. No baby should ever have to suffer pain, or be scared the way she has been. And it's not over. We still have her big corrective surgery ahead of us. No adult should have to suffer through that - let alone a little baby.

Helena has already had two cardiac cath procedures, and one surgery in which they did have to open her up and break her sternum to put in a shunt. She's been intubated for weeks at a time and had IV lines put in both her little legs. 

This is Helena 2 days after her shunt surgery, so she's just over two weeks old here. I wasn't allowed to see her the day after it because I came down with a crippling stomach flu the night after her surgery.

Helena in recovery after her most recent cardica cath. The owie on her cheek is from the tubie tape.

Helena isn't actually on many meds, considering what she's got going on. She's on Lasix, a BP med, and baby aspirin for her heart. Throw in some reflux meds and that's it. The nice thing about her NG tube is that I don't have to battler her to get her to take the meds. That's one thing I'm not looking forward to when she finally does start eating orally.

When she does go back in for corrective surgery, we're looking at about a two week hospital stay if all goes well. Then another 6-8 weeks of restricted activity while her sternum heals again. 

It's amazing how quickly something becomes "normal". It's normal for us now to have to resinert her NG tube. It's normal to have to give meds four different times during the day (they can't all be given at the same time because some interact with others badly). It's normal to take her oxygen levels a couple times a day. It's normal to do daily weight checks. It's normal to constantly be checking her coloring. This is just what our life with Helena is like. This is our new normal. This is what normal is like with a Heart Warrior.

So now I'm going to ask you for money cause that's how I roll.

Go there. Give me money so that more research can be done to figure out what causes CHD's, and to help other families who aren't are lucky as we were with our diagnosis. Go help our Heart Warriors.

Sunday, January 10, 2016

Update 1.10.16

I haven't updated in awhile and I'm sure you're all just dying to know what's been going on over here. We're just so fascinating, I know.

We all survived a variety of colds over the holidays that of course caused My Little Guy to wind up with an ear infection. Helena caught them too, but since she is a fierce warrior baby she handled them fine. She likes to do this thing where I'm looking at her and for whatever reason (lighting, my own paranoia, whatever) I feel like her coloring is off so I rush over and hook her up to her oxygen monitor and it spits out... 91. Ok, sure, yeah, Mommy is crazy. Good then. This exact scenario has happened at least 4 times now.

We were supposed to get the cardiac cath back in December, but Helena was in the thick of a cold and at that point and the nurses and doctors didn't want to risk anything by doing it while she wasn't 100% well. Her pediatrician and I felt that asking for 100% health during cold and flu season was a stretch (he cleared her for the cath saying her lungs were clear and her congestion was all in her head and that even as a cardiac baby she looked better than some of his normal patients with colds), but agreed that unnecessary risk was a bad idea.

The cath was rescheduled and we all hoped that she would be healthy for it this time around.

The issue was that in addition to having her NG tube in, she's also teething so she's pretty much in a constant state of congestion. It's hard to tell if it's from a cold, or the NG, or the teething or what percentage of those three things is causing it. Even though our cardiac nurse told us the cath wasn't urgent, we still wanted to get it over with. And it was going to give them the information they needed to help figure out the timing of her corrective surgery. As a planner, I needed that information.

As it worked out, My Little Guy's ear infection wasn't better after his 10 days of drugs, so the day before Helena's cath I took him into the pediatrician and brought her in for a quick once over. My Little Guy got another round of drugs (and it's sadly looking like he might need a third - poor guy), and Helena got the all clear for the cath. It did seem to make a difference when the cath nurses called that I was able to say that she just saw her pediatrician who said it's more teething and the NG than a cold and they said the cath is on.

So we woke up at 4:45 that morning, after not much sleep and brought her in. It's a horrible experience to say the least, but it's nothing compared to what we'll go through for her corrective surgery. Having to hand someone your baby and watch them walk away, knowing they're going to do things to her that no baby should ever have to have done is heartbreaking. You're literally putting the life of your child in someone else's hands. It's a feeling I wish no one ever had to feel.

Luckily the catheter procedure was only about 2 hours, so the waiting wasn't too bad at all. The doctor came out and said everything went well, she did great, and they got good pictures and video and information. We waited a bit longer while they woke her up and extubated her and brought her back to the recovery room.

When we finally got to see her she was PISSED. She was starving (no food since late the night before per surgery instructions) and uncomfortable and scared. Some snuggles and food and loves and she was out cold. Helena spent most of her time in recovery sleeping, but did great. She did so great in fact that they told us we could go home that evening. When we had scheduled the cath they told us that with the little ones they usually keep them overnight for observation just to be safe, but they felt she was fine and sent us home. I was very happy to not have to spend the night on that horrible hospital couch-bed thing with a constant parade of nurses coming in. I did end up sleeping on our couch since Helena fell asleep in her downstairs bed and I didn't dare move her, but as I told my husband - our couch was significantly more comfortable than the hospital one.

The next day Helena was more back to her usual self. She was still a little fussy, and a little needy but she was more smiley and slept less. By the second day after the procedure she was totally herself again.

Unfortunately she's caught another cold, but she's handling it fine so far. She has a six month checkup this week any way, so she'll see her pediatrician and make sure her lungs are clear and everything but I suspect they are.

We met with her surgeon who once again went over the two surgery options for Helena. Because she not only has TGA, a VSD, and a pulmonary stenosis, but one of her coronary arteries is in a weird place, he feels that one procedure might be safer but won't know for sure until he gets in there and sees everything. That's sort of what he had said before, so that wasn't a surprise. What was interesting is that he told us that even if she has to have the surgery requiring artificial parts (and therefore more surgeries down the line to replace them as she grows), they're hoping that in the next 10 years or so they'll be able to create the parts she needs using stem cells (in all the chaos of her diagnosis we forgot to bank her cord blood, but we did bank My Little Guy's so they might even be able to use that) and then since they'd be biological they wouldn't need to be replaced as they'd grow with her. That sounded super cool.

He also said that because her oxygen levels are doing so well and she is growing, there's no need to rush into surgery. He said let's wait at least another 2-3 months and keep seeing our cardiologist and when her levels start dipping a bit, that's when we'll start thinking about scheduling her corrective surgery. It was a relief knowing that she's doing well, and there's no need to rush anything. The bigger she is the easier the surgery will be, and the easier her recovery will be. He told us that even after this big corrective surgery she should only spend like 2 weeks in the hospital which is amazing considering what they'll have to do to her. Babies heal fast.

So for now we're just doing what we're doing since it seems to be working. She's teething like crazy and putting everything in her mouth which is huge progress in getting her off the NG tube. She's still not taking a bottle, but I did find one that she tolerates in her mouth more than anything else so we've been working on that. I find it amusing that the whole deal with this new bottle is that it's supposed to be for breastfed babies who refuse any other bottles, but Helena has literally never been breastfed and yet this is the bottle she has decided to like.

We've also started playing around with solids, or "goo food" as My Boys call it. She ate half a container of carrots over two meals the other day, so that's huge progress.

I think that's it. The rest of the family is doing well. We appreciate all the care and concern and thoughts and prayers from everyone. We are very lucky to have you all in our lives.