Thursday, November 19, 2015

Update 11.19.15

Things here are going well.

Helena finally kicked that horrible cold and has been putting on weight like a champ. We had a cardiologist appointment on Monday, and he was very happy to see how much weight she's gained. Her cardiac functions are all doing what they're supposed to do. Her doctor did an echo on her and said everything looks great. They were planning on discussing her at the big cardiac meeting last night, but the general thought is that we'll do a cardiac catheter procedure in December to get a better idea of what exactly is going on in her heart. Then we'll hold off on the big corrective surgery until January or February. She's doing really well and putting on weight so they want to wait as long as possible to do the surgery. It's easier for everyone involved if she's bigger and stronger.

We also saw Helena's pediatrician. That appointment basically revolved around her reflux. We felt it had gotten a lot worse, and I wanted to know why and what we can do to fix it. Turns out that in all babies, not just cardiac ones on NG tubes, reflux peaks around 4 months. Which is how old Helena is. They start moving around more, which stirs up the reflux crap in their tummies and it comes up more. Her pediatrician said because she is gaining weight so well (she went from the 5th percentile at her 2 month visit to the 25th at her 4 month - that's 4 lbs she's gained in 2 months!) it's clearly not bothering her THAT much so he's not changing anything. Her job right now is to grow as much as possible, and she's doing that well so we're not rocking the boat. What we're doing is working, so we're just going to keep at it. She also measured in at 25 inches long, which is the 69th percentile for height. This once again allows me to make my "she's tall and skinny, like her mommy" joke. *snorting* Poor baby girl also got her vaccines (cause we ain't crazy) and she qualified for the RSV antibodies shot since she's a cardiac baby. All in all it was four shots, which was rough for everyone. I hate having to restrain her and watch her poor little face when the needles go in her legs, but she needs the shots. Especially the RSV antibodies one. RSV lands perfectly healthy kids in the hospital, it could be even more dangerous for Helena.

We're also still seeing a speech therapist and a physical therapist and are in the process of switching from private therapists at the hospital to Early Intervention therapists. All Helena's doctors said they don't want her going out in the world any more than she absolutely has to during cold and flu season, and the Early Intervention (EI) people will come to the house to see her. It also makes my life a lot easier because I don't have to arrange childcare for her brothers while I take her to therapy twice a week. I can just banish them to the playroom and they'll stay out of our way.

As far as therapy goes, Helena is also doing well. Her speech therapist loves seeing us because Helena is progressing so well so quickly. Her therapist said she's done more in the 6 weeks that we've been going than some kids will do in 6 months. We've gone from complete oral aversion (screaming, coughing, gagging anything we would attempt to put anything in her mouth) to oral defensiveness (allowing us to put a bottle in her mouth, but still being a bit scared and wary of the situation). She's still not taking her feeds by mouth, but she will let me put the bottle in her mouth and she'll play with it and swallow what comes out. She's lost her instinctual sucking, so we're working on ways to get her to eat that either encourage her to figure it out again, or don't involve sucking (I've ordered sippy cups and we might transition to those super early since without the valve in you don't really have to suck on them to get milk out). She's taking 20 mls orally a couple times a day, which sounds like nothing but considering a few weeks ago she wouldn't even open her mouth for the bottle and would scream if I tried to put it in her mouth it's huge progress.

In physical therapy we're working on general strengthening and stretching. After spending a month in the hospital Helena's arms and legs were a bit weaker than they should be. And because of the surgery we couldn't do tummy time for weeks after she came home, so she was behind on that as well.

"What the crap is this nonsense Mommy?"

She tolerates it now, rather than screaming her head off whenever we tried it, which was the case before. We're also working on reaching and grabbing at toys and generally getting her whole body to be more midline. From the reflux, she wants to keep her head turned up and to the right (apparently it's A Thing for all reflux kids), so we're working on fixing that, as well as getting her arms and hands more in the middle. She's just started really reaching for her toys, so we're really encouraging that too. A lot of "normal" development stuff is stuff we need to work on, but everyone who sees her says that she's doing really really well considering everything she's been through.

She's both holding and looking at the toy. This is big in our world.

All in all things here are good. We're going to keep doing what we're doing and hope it stays that way for awhile!

Saturday, October 17, 2015


When Yiya was doing her physical therapy, she would pronounce it "therrr-a-pee" and it's one of those things that have lived on in our family.

Helena is now in therrr-a-pee too. We're seeing both a speech therapist and a physical therapist and she's making good progress with both.

With the speech therapist Helena has gone from holding her tongue in a defensive position (who knew there was such a thing?) to not, and she will actually allow things in  her mouth without screaming and/or gagging now. She's licking her hands, her blankeys, her lovey and anything that comes near her mouth. It sounds like nothing, but it's actually a big deal for her. Just two weeks ago none of that was happening. She's actually letting me put her nee-nee (Natarelli for pacifier) in her mouth now. She's still not latching on to it, but she's tolerating it in her mouth and playing with it in there which is big progress for us. Her therapist actually said she's made more progress in two weeks than some babies make in two months, so we feel really good about that. We're still not attempting any bottle feeds, but we feel good that there is progress being made.

We also just started physical therapy (PT) per the suggestion of our speech therapist. Helena's default position is to hold her head to the right looking up and away to the right. We learned that this is very common for reflux babies, as it helps ease the pain of the reflux. The downside is that her neck muscles aren't strengthening as they should be, and she's really tight on the left side. Her speech therapist said if we start PT it will help strengthen the muscles and it can help the reflux and I'm on board to do anything to help that so we signed up. I'm actually super glad we did because it turns out Helena really needs PT. Because of all her time in the hospital, her arms and legs are weak and in weird default positions from being strapped down and hooked up to everything. She despises tummy time with a vengeance, and frankly because of her surgery we weren't able to start it right away so she's behind on her head/neck control. The therapist showed me different ways to do help her work on that, as well as stuff to get her reaching and stretching more and get some more muscle in her body. I had no idea she was so far behind, so I'm so glad we signed up for this. We're already seeing progress there too - she's reaching for toys on her playmat and putting her hands in and near her mouth.

It may seem like nothing, but to us her sleeping like this is major progress

All of this stuff has thrown us for a loop. We were so focused on the heart stuff, we never thought about how the heart stuff would impact her regular development. We never even considered needing all this therapy, but we're glad that it's available and that it's helping her so quickly. It was just very unexpected for us, and I wish someone had warned us that cardiac babies almost always have reflux and/or eating issues and that she might have motor control and strength issues from her time in the hospital.

Otherwise she's doing very well. She's finally beat the cold (it took us like 3+ weeks to beat it, of course it took her a bit longer), she's smiley and she's interacting with people more. The one downside to her getting better control of her hands is that she's becoming too good at pulling out her NG tube, so I've resorted to putting socks on her hands anytime she's in her bed. She wakes up and is so quiet we don't realize she's up and then pulls it right out. We went through two in two days, which resulted in a call to our medical supply company to order more. I need more than 4 a month with this kid! She's also gaining weight well and is over 11.5 lbs now!
The plus side is we get no-tubie photo shoots 

So things are good. We're getting her the help she needs, and she's progressing and developing well with it.

Monday, September 28, 2015

Wait and See

We had another appointment with our cardiologist today, and it went well.

The cardiac team has decided on a "wait and see" plan for Helena.

She's growing, just not as quickly as they had hoped, but she is steadily putting on weight. She is still battling the cold (for realz, all the adults in the family are still battling the damn cold), and her cardiologist said it's actually a good sign that she's handling the cold so well. She's fighting it off on her own, which is showing how strong she is, so that's good news.

They're going to let her keep growing and see what happens. She's doing well right now so they don't want to rush into anything, and they're hoping in a few more months she'll have grown into her shunt and then they can put off surgery as long as possible.

The one thing we do need to work on is getting her to eat orally again. We've been doing dips, which means dipping her pacifier into her formula and putting it in her mouth while the NG tube feed is happening so she's getting some sort of oral stimulation, but she is still refusing the bottle and she's still not latching on to the bottle or the pacifier.

I've made an appointment with a speech therapist at our local hospital (NOT the hospital she had surgery at, with the stupid speech therapist we hated) and I'm hoping she can give me some guidance as to how to get Helena to eat orally again. She was up to half her feeds by mouth before the cold knocked her out, so I'm hoping we can make her relearn how to do that. So we'll see how that goes, I'm hoping it's a better experience than the one we had with the speech therapist earlier.

Other than that we're to keep doing what we're doing and let Helena take the lead and show us what she needs.

I'd also like to thank everyone once again. It's stupid and cliche, but it's also true - you really realize who truly cares about you when something bad happens in your life and the outpouring of love and support and prayers has been amazing and we appreciate all of it. Our eyes have been opened that some relationships aren't what we thought they were, but we've also realized how strong others really are. We have a long road ahead of us, and we're so grateful that we have all the love and support that we do going forward. So once again - thank you.

Despite all her troubles, she's a happy girl

Friday, September 18, 2015


We haven't had the best couple of weeks here.

What we thought was Helena's reflux acting up was actually a cold that she caught from My Big Guy (he also shared it with the entire family). The symptoms of reflux and a head cold are shockingly similar, and with the dire warnings the doctors and nurses gave us about Helena catching a cold we overlooked that possibility because she wasn't in that bad of shape. Luckily, we went to the hospital to get her stitches clipped and her cardiac nurse was all like, "No, that's totally a cold!" It was just good timing that I happened to make the appointment with them because her stitches happened to start peeking out. We would have just kept thinking it was the reflux.

The good news about the cold is that it explains her aversion to eating - she can't breathe while she's eating because her nose is so stuffed up. Once the cold clears up we're going to get back to trying to get her to take more food by mouth, but at least we have a real reason as to why she stopped her oral feeds. After getting some new meds and switching to Nutramigen the reflux seems to be doing much better, we just need to get the cold under control now. All her doctors and nurses agree that there's no point in trying to make her eat by mouth while she has the cold because again, she can't breathe while doing it.

We had a visit to the pediatrician who confirmed that the cold is just a cold and there's nothing we can do but let it run its course. Her lungs are clear and she's not running a fever so meds won't help with anything.

We also saw the cardiologist and learned that the shunt seems to be doing its job a little too well. Helena has too much bloodflow going through her heart right now. They put in a big shunt assuming that she'd grow into it rather quickly, but she's not growing as quickly as anyone would like so the shunt is still too big. As a result Helena has congestive heart failure.

Now, congestive heart failure is a horribly misleading name for what's going on. Her heart isn't failing. Basically what it means is that her heart is working too hard, which is is because it has too much blood flowing through it. The cardiologist and the surgeon and the whole cardiac team from our hospital met and discussed Helena and decided not to do anything right now, but to give her a little more time to grow into her shunt. If she grows into the shunt the heart failure will go away. In the meantime we've adjusted some of her meds to deal with the symptoms of the congestive heart failure and we're going to really try to get her to eat more. Her cardiologist said her heart functions all look great, again, it's just too much bloodflow going through it.

It's sort of horrible cycle again - her body is working so hard just to be alive that she's tearing through the calories she consumes so quickly that she's not gaining weight. But if we try to give her more food she's likely to puke it up, or it might cause her body to have to work more to digest more and burn even more calories. But she needs more calories to grow. We upped the volume of food a little, but we don't want to overwhelm or overwork her.

We go back to the cardiologist in two weeks and we'll see what he has to say about her then. Hopefully by then the cold will be gone and she'll have gained some serious weight.

Despite the setbacks Helena is still happy. She loves being snuggled, especially when there are butt pats involved. She has also developed a fondness for her playmat which her brothers love since they get to lay on the floor and "play" with her.

We're just taking it one day at a time, and hoping and praying for the best. Her doctors don't seem super concerned with the situation since they're giving her more time to let her body sort of work this out on its own, which we really like. Hopefully it does just that.

Tuesday, September 8, 2015

Tubie Troubles

When dealing with a sick baby, there are going to be highs and lows, good days and bad, and ups and downs.

We're currently dealing with more of a "down" situation in regards to Helena's eating. Her heart is fine, her cardiologist said she's doing well, but we're having some feeding issues.

Helena was on the NG tube, and we were doing great in increasing her oral feedings. She was taking almost half her feedings by mouth and doing well with it. Then reflux hit. She had all the classic, horrible reflux symptoms - gagging, coughing, spitting up, crying when we tried to orally feed and refusing the bottle. Since she needs to gain weight (her shunt is technically too big for her - they put it in assuming she'd grow into it so she needs to grow into it!), we just sort of stopped pressing the oral feeds rather than torture her (we knew it hurt her to eat by mouth) and did pretty much all NG feedings while we figured out new meds and a new formula (she's now on Nutramigen).

The reflux seems to be getting better, but Helena is still refusing any oral feedings. She's still gaining weight because we're using the NG tube, but she really needs to learn how to eat by mouth again.

We're working on it, but it's hard because she does still cough and gag when we try to use the bottle and it's so hard seeing that happen to her. I know it's awful for her too, but I also know she needs to wean off the NG tube and the longer we let her do just NG feedings the harder it will be.

We'd really rather tackle the issue ourselves after having a terrible experience with the speech therapist in the hospital. She only saw Helena three times and was dictating how she would eat. She claimed that Helena wouldn't/couldn't eat orally but that was because Helena was asleep when this chick showed up. This chick woke her up and then tried to immediately make her eat from a bottle. Of course Helena refused! This chick then assumed that meant that she couldn't do it, and recommended we only try feeding tiny amounts by mouth. How the hell do you make recommendations for a patient you've only seen three times (while we were there a month, it's not like she didn't have ample opportunities to come by) and are attempting to feed in a not normal situation? She also never called us back, and when I requested she come see us during one of our sleepovers she didn't. Her tips and tricks seemed useless and overall it was just a terrible experience.

The problem is that because Helena really needs to gain weight, we need to make sure she's getting all her calories in each day so we HAVE to use the NG tube to feed her. Well, the NG tube runs down her nose and throat and into her tummy. It keeps the pathway open for the stomach acid to gurgle up from the reflux. The NG makes the reflux worse, but we can't take the NG tube out because she won't eat without it because of the reflux. We're stuck in a horrible reflux-y cycle.

I plan on reaching out to some of her nurses for tips, but it's frustrating and hard. It sucks to see her suffer through her feedings, and not sleep well knowing she's in pain.

So we're in a valley right now. It's hard, and it sucks but we'll work through it. We have a great team of medical professionals helping us, and I am confident we'll get her eating by mouth again, it might just take some time.

Monday, August 31, 2015

Update 8.31.15

We live in a "no news is good news" kinda world over here. I haven't updated cause we've been busy and well, nothing major has changed (which is good news).

Helena is still doing well. The only real hiccup we've had is that at her surgical follow-up we discovered she wasn't gaining enough weight. Because of her heart defect and the shunt, her body is working a lot harder than a normal baby's and so she's burning through calories much faster than a normal baby would. She was already on fortified formula (we have our own special Helena recipe for mixing up the Similac) to get extra calories, and when we learned that she hadn't gained weight in like two weeks (but she also hadn't lost, so that was good) we upped the calories on the mixture. So we're rocking 27 calorie per ounce formula and it's working because she's been gaining weight daily since we made the switch (we also are now those people with a baby scale and are weighing her daily per the doctor's instructions). She's tolerating the new mixture and now she's growing which is great.

We worked with her cardiac nurse to try to wean her off the NG tube but she wasn't having it, so we just adjusted her feeds so that now she's eating every four hours instead of every three which is so much better for those of us who have to feed her.

We've been just hanging out at home and adjusting to our new normal. My Husband returned to work (boooooooo!) so My Guys and I have been home with Helena ourselves during the week now. They adore their sister and are so happy to help and try to calm her down when she cries and are just in love with her.

My Big Guy talking to Helena

We did have a fun adventure where Dr. Mommy and Dr. Daddy had to put in a new NG tube for her. I had put Helena in her bathtub on the kitchen table and was just finishing up her bath when her brothers came home. They hadn't seen me bathe her yet and were super excited to see what was going on. So I let them pour a bit of water on her tummy and wash her feetsies and then I said it was time to take her out. I had cleverly draped the feeding tube over the side of the tub so it wasn't sitting in the icky bath water. As I lift the squirming, wet, slippery baby out of the tub My Little Guy leans over to see better and leans right on the NG tube hanging off to the side. It snagged just enough to loosen the tape on her cheek. I yelled out "Noooooo!" and tried to grab it to hold it in place, but you know, I was also holding the naked, squirmy, slippery baby who was now crying because she was out of the tub and cold and so I couldn't. Helena sensed that the tube was loose and made a weird snorting noise sending it flying, covered in snot out of her nose. That was that.

On the plus side, we did get some adorable shots of her without anything on her face (it was one of only a handful of times even we have seen her without anything on her face!).


And Dr. Mommy was awesome and inserted the tube on the first try. Both Helena and I were super excited about that. 

I've also started to dabble in babywearing. Helena LOVES to be held and snuggled which is delightful, but at the same time Mommy has shit to do. As much as I'd love to just lay on the couch snuggling her and watching HGTV I can't. I was going to investigate wraps and carriers (the Baby Bjorn was a disaster with My Guys that ended with all of being super hot and sweaty and miserable and a donation to Goodwill) when my nextdoor neighbor came over with a wrap/carrier thing and said it was her favorite when her kids were infants and she gave it to me. So far so good, as evidenced by this super flattering pic of me this morning enjoying my coffee while Helena sleeps nestled up in there.


So that's going well. I'm going to show My Husband how to wear her so he can enjoy the snuggles and freedom too. 

That's pretty much it. We have our slew of doctor's appointments set up and we'll just keep doing what we're doing since it seems to be working for all of us.

Saturday, August 15, 2015

A Bumpy Ride Home

We are Home.

Sweet girl enjoying her swing

I should say, we are home again.

We were officially discharged after a month in the hospital (2 surgeries, 3 floors, and 4 weeks!) on Tuesday August 11th. We can home and attempted to settle into our new routine. Things were going well, we had visits from all of the grandparents, including My Husband's grandma who is one of Helena's namesakes. She had not met Helena before as all the walking to visit her in the hospital would have been hard for her (she's 95 and recently had knee replacement surgery). That was A Moment.


On Thursday, we took Helena to the pediatrician for her first well baby visit. Things there went as well as expected (poor little girl doesn't like being unswaddled, or naked and the visit involved a lot of both). We loaded her up in her car seat and headed home.

Our pediatrician is less than 10 minutes away from our house. Helena was not pleased about the arrangement, and let us know about it by crying the entire way. She's had much more intense and longer lasting crying fits than the one she was having, and again, it's less than 10 minutes away so we just pressed on and drove home. When we got home we took her out of the seat and realized her lips were bluish, her skin was mottled, she was sweating profusely and was having labored breathing. She did start looking better once she calmed down (her lips regained colors, her skin starting pinking back up) but her breathing was still really labored so we called over to the hospital and one of the cardiac nurses told us to bring her back in. So off to the Children's Hospital ER we went.

Of course by the time we got there, Helena was basically fine. She was breathing a little fast, but it wasn't the hard, labored breathing she was doing in the midst of her fit. The cardiologists came down to the ER and said they thought it was just a one time event due to fussing too much, but they admitted her for observation overnight just to be safe.

So Helena and I had another hospital sleepover. They watched her all night and nothing happened. She was fine. They did an echo just to make sure her heart and shunt were all still doing what they're supposed to do and they are, so they sent us back home. Everyone agreed it was a one time event, she's still doing fine. We just have to watch her very closely when she's having a fuss fit and try to calm her down as soon as possible. On the plus side, because we were back in the hospital we updated one of her meds, made sure that her NG tube was placed properly (Drs Mommy and Daddy placed this one at home), and I was able to snag some of the hospital bottles she seems to prefer.

Now we're back home, again and settling back in. Again.

We're all doing well. Tired, but good. Helena is on an every three hours eating schedule, even during the night because her body and heart are working so hard she needs extra calories so even if she's asleep or not really super hungry we're feeding her to make sure she's growing and gaining weight so that's kinda brutal for us, but meh, you gotta do what you gotta do. She's still on the NG tube, but now that she has her preferred bottles is doing well taking food by mouth too which is awesome.

Her brothers are delighted to have her home. They cannot help enough. Any time Helena starts crying they come running to tell me, even if I'm sitting three feet away from her. They love her. They shower her with kisses and loves and keep wanting to share their toys with her ("No, I don't think Helena needs a Thomas book, but thank you!"). It feels so good to be home and together.

We know we have a long road ahead of us, and we're still taking it day by day, but so far things are good.

(note the middle finger peeking out of her swaddle, that's my girl)
"Fuck you, I'm home bitches"

Monday, August 3, 2015

Update 8.3.15

Look! Look at our sweet girl with only an NG tube on her face! No more oxygen! Hooray!!

They've taken Helena off all her oxygen so she's breathing 100% on her own, just room air. They've also removed her arterial line, and taken her off all her IV's (they're switching a bunch of her meds to get them orally). 

We had a great visit today where we met with speech therapy to work her sucking reflexes. Because she's never actually eaten through her mouth she's lost some of that, but as you can see with her using her pacifier, she's getting it back. They tried to feed her with a bottle and she wasn't a fan, but they're hoping to get her to take food from a bottle in the next few days and get her off the NG tube. We did a lot of practicing with her pacifier, and she seemed to catch on to that pretty quickly so hopefully she does the same with the bottle. They've also upped the amount of food she's getting to full feeds, which she seems to enjoy. 

Even off the oxygen all her numbers are looking good, and she's doing everything she needs to. 

I also got to get some quality snuggling in, which is always wonderful. 

Helena is doing great, and meeting every challenge thrown at her so far. Thank you all for your prayers and support, it's all working!

Friday, July 31, 2015

Update 7.31.15

We've had a couple of good days!

Helena had her shunt surgery Monday, and it went well. The surgeon called her a champ and said she did great. Since then she's been in the Pediatric Surgical Heart Unit recovering (They call it the PSHU. Because we're mature adults we've taken to calling it the Pikachu) and everyone says she's doing great.

They took her off the ventilator yesterday afternoon, but kept her on her sedatives over night so that she could rest and get good sleep after the HUGE adjustment of finally being off the vent. She's basically been on a ventilator her whole little life, so getting off of it and having her numbers all stay good is big. It's a giant adjustment for her, so they're just letting her take the lead and not pushing her too hard.

Our sleepy little girl resting after her big day

Helena had a great night, got a lot of good sleep and rested well. This morning all numbers are looking great and settling back to where they're supposed to be after the big day yesterday. They're going to start giving her food again, which makes this Polish / Italian / Greek family very happy! It'll be through the tube again since eating from a bottle is a workout for a normal baby, for her only 4 days post-surgery it'd just be too much. That's another goal for another day. Baby steps. Getting off the vent was huge. Eating will be huge for her too, and it should make her happy.

We're taking things slowly, and easing her off of the pain meds and sedatives carefully and just letting her heal and recover from surgery. Her body has a lot to adjust to and we don't want to overwork or overwhelm her so we're following her lead. Everyone says she's doing really well, and we're so very glad to hear it.

All her nurses and doctors have also said she's incredible feisty, which we consider a very good thing. Apparently when they extubate babies, their voices / cries are usually very weak right after, especially if they've been on the vent for a long time like Helena had been. Not Helena though. They told us that when they took the vent out yesterday she screamed and you could hear her down the hall. That's our girl :)

Friday, July 24, 2015

Update 7.24.15

The decision was made last night to go ahead and do the shunt surgery on Monday. Helena's oxygen saturation numbers just aren't where we want them to be, and all the doctors agree that it's not due to a lack of oxygenated and unoxygenated blood mixing, but due to poor blood flow because her pulmonary valve is so small. The only way to increase blood flow at this point is to put the shunt in.

Today we met with Helena's surgeon who is pretty much the most amazing man ever. He is so calm, and so reassuring, and so confident and that he just makes us feel so much better about Helena's situation anytime we speak with him. He went over the surgery in detail and answered all our questions about the surgery and his thoughts on her situation. He told us what his plan for her is, and we agreed that it is a good one.

The current plan is that Helena will have the shunt surgery on Monday, and after recovery at the Children's Hospital (which should be about two weeks) she should get to come home.

I can't even type that without crying.

She should get to come home. We'll be able to hold her. She'll meet her brothers. She'll be home. 

The shunt should last her until we decide it's time for her big surgery to fix her TGA and VSD in about six months or so. There are minimal risks to the shunt surgery, and it should increase the blood flow to her lungs, which would raise her saturation levels to a point where they don't dip down to unsafe levels when she cries or fusses.

We really feel it's the best option at this point and we're so grateful to all her doctors for doing everything they could to try to avoid surgery, but we all agree it has to be done. 

Until then, Helena will stay in the NICU. She is still stable and comfortable, and they're leaving her on the ventilator so that they don't have to just put it in again on Monday. She's getting milk through a tube again, and they're even upping the amount they're giving her at each feeding which she loves. Our little Polish, Italian, Greek baby girl LOVES her food :) 

Once again, we thank you for all your support and thoughts and prayers. We feel truly blessed to have so many people care about us and are grateful for all of you.

Thursday, July 23, 2015

Update 7.23.15

First of all, we'd like to once again thank everyone for your concern about Helena. It makes us realize just how lucky we are to have everyone in our lives, and how much you care for us and her and it really does help and mean a lot to us. Thank you. 

So here's the latest update - Helena's doctors had decided not to do the catheter procedure on Monday at the last minute, but then on Tuesday, as I was washing up to go in for a visit my phone rang. I pulled it out and it said it was the NICU calling. Turns out they were calling to tell me that they decided to do the procedure after all and that Helena was going down for it in about an hour.

That was rough. It was more the surprise than anything else. It really caught me off guard, but they said they hoped it would help increase her oxygen saturation. 

I called my husband, he came to the hospital and Helena went down for her cardiac catheter procedure.

The procedure went well in that they were able to make a hole in the upper chambers of her heart bigger (a hole that is supposed to be there, unlike her VSD) to increase the amount of blood mixing in the hopes of raising her oxygen saturation levels. They also tried to stretch out her pulmonic valve, but it's just so small that they weren't able to do that with the catheter. They took a bunch of pictures and measurements and got a lot more information than we had earlier by doing the procedure too so that was good. Helena was under for it, but was stable the entire time and did great.

Since then, her oxygen saturation levels haven't been great. They've been ok and better than they were, but when she cries or fusses they go down significantly and since you can't really tell your newborn "Hey, don't cry!" we have to figure out a way to get the baseline levels up high enough so that when she does cry her levels stay where we want them.

She is still on the ventilator while they try a couple of other options to see if they can increase her saturation levels but there is discussion of doing surgery to install a shunt that will create another way for her blood to mix and hopefully increase her oxygen saturation. We're taking it day by day and seeing what her body does and how she responds to different things. Her doctors are all working together to determine what's best for her, and they're not rushing into anything which we like. 

Helena is stable and comfortable, which is all we can hope for while we figure out what the next step is going to be. 

Monday, July 20, 2015

A Good Day!

So I set up the hospital's website updating thingy, but anyone who wants to see it has to create an account and login everytime which is just stupid so I'll just post updates here when I can.
Today was a good day!
Brett and I had gotten to the hospital early this morning as Helena was scheduled for a catheter procedure to open a hole in the upper chambers of her heart. This hole is supposed to be there, unlike the VSD in the lower chambers of her heart. Her oxygen levels haven't been as good as we had hoped, so the thought was that opening this hole would allow for more blood to mix and raise her oxygen levels.
The cardiology team sent someone down to do an echo on her, and after looking at that they decided to cancel the catheter procedure! Helena's lungs still have a lot of pressure in them, which is normal - babies are born with a lot of pressure in their lungs and it slowly goes down. Based on what they saw on the echo the cards team decided to NOT do the procedure, but give her some more time to let that pressure in her lungs go down on its own and see if that helps raise her oxygen levels at all. Awesome news to hear! If the levels don't go down, we'll re-evaluate and perhaps do the procedure later, but for now we're going to give her body a chance to see what it does on its own.
Because she isn't having the procedure done, she gets to be fed again which she LOVES. She is currently being fed through a tube down her throat because she's on oxygen and it's just too difficult for her to manage sucking/swallowing while receiving the amount of oxygen she is getting. But that doesn't seem to bother her, she gets very excited when she's being fed and has been very angry that she hasn't been eating the last few days (when they stop the tummy feeds, she is getting nutrients and stuff through an IV, so it's not like she's starving or anything).
But the most exciting thing that happened today was that Brett got to hold her :)
Because she was on the ventilator (she's now just on oxygen through her nose) we hadn't been able to hold her until now and it really did wonders for all of us. We felt better, and we think she did too :)

Sunday, July 19, 2015

"You're having a baby today." "%&$^."

So here's the longer update on what happened on the 14th for those who are into birth stories and all that jazz.

I had been going to NST's (non-stress tests, basically they monitor my contractions and the baby's heartrate for 20-30 minutes while I hang out reading in a recliner, it ain't all bad) twice a week since I hit 36 weeks. It's something the hospital does with all cardiac babies, as some of them are at a risk for being stillborn (not really a risk in our case but they still made me do it). I had an appointment for one of those, as well as a visit with my OB on Tuesday the 14th to determine what the plan for my induction on the 16th would be (what time should I get to the hospital, what are they going to do, how "ready" I was, etc).

I had full blown pre-eclampsia with My Big Guy, and was induced for high blood pressure with My Little Guy. Luckily, with Helena, my BP had been great well past the point of the high BP with both the boys. However, I will be the first to admit I was a bit nervous at the NST and my OB appointment since you know, we were figuring out what was going to happen. It had been a week of anxiety and fear for me and my husband and I'm sure that contributed to my BP being higher than expected.

They took my BP at the start of the NST. It was high. They told me they'd take it again at the end after I had been resting for awhile. It was still high. They sent me over to the OB. It was high when they took it. Then my wonderful, delicate OB says to me, "We're gonna take it one more time, if it doesn't come down you're having a baby today."

Well thanks assface, what do you think my BP is going to do after you say that? Of course it was the highest it had been all morning at that point. He tells me, "You're having a baby today." I replied, "Fuck."

I had none of my shit. I stupidly hadn't even packed a bag because I was being induced Thursday, I'd pack Wednesday night, right? Wrong. I asked if I could go home and get my crap. They said no, I was being admitted immediately. They sat me down in a wheelchair and took me over to Labor and Delivery. The boys were supposed to get haircuts that afternoon (man do they need them!). We had our babysitter coming that evening so my husband and I could go out to a nice dinner one more time before things got crazy. I had grand plans of grocery shopping Wednesday morning while the boys were at camp. My husband thought he had two more days to get shit done at work. Not so much for any of it.

All this time I'm calling and calling my husband and he's not answering. I'm calling his cell, I'm calling his work number and neither him nor his secretary are picking up. Of course.

I ended up texting one of our friends who works with my husband, asking if he knew my husband's whereabouts (it was lunchtime, so I thought maybe they were out to lunch or something). He replied that yes, both he and my husband were teaching a class right now and how wonderful my husband was.

I replied something like, "Oh that's great, I'm being admitted and induced now, so can you tell him to you know, call me back?"

Two minutes later my husband called me, asking me, "Are you serious?" to which I replied, "No, I fucking joke about being induced and pull you out of a class for it. Yes I'm serious."

I emailed him a list of shit to pack for me, and he left work early and came to the hospital. It was an impressively fast trip from downtown to our house (via cab) to the hospital for him.

They started pitocin around 1:30ish. I got my epidural around 4:00 (praise be to the anesthesiologist).

Around 6:45ish they came in and said they were going to break my water since I was only at 6 cm. I said cool, things are gonna go really fast now so be ready (with My Little Guy, they started pitocin and broke my water at the same time and he was born 3 hours later). I think they don't really take you seriously when you say these things, but dude I know what's up. I went from 6 cm to 10 cm in about 30 minutes (which felt great as my epidural was starting to wear off) telling them the whole time that we were getting close. Sure enough, Helena was born at 8:00 after about 3-4 pushes. It hurt like hell, which was a great motivator to get her out. They kept telling me to catch my breath but I was all, hellz no, this hurts like a bitch, I am pushing this baby out and getting this pain over with. And I did.

We had what felt like 50 people in the room with us (the OB team, the neonatologists, the pediatric cardiac team, and then at the last minute they asked if a dude training to be an EMT can watch too and when your epidural is wearing off and there's already 35 people in the room, what's one more? Sure! Invite strangers off the street in for all I care at that point) ready to take care of Helena .She was born nice and pink and cried right away. They took her, wrapped her up and whisked her off to the NICU right away.

Helena has obviously been in the NICU since then, and even though it's only been 6 days we've had our ups and downs and are working with all her doctors to figure out what the best plan for her is. She's on oxygen (they did take her off the ventilator and she's now just on the nosey oxygen) and not much else, and she's stable and comfortable which is good. We're all following her schedule and her lead and letting her tell us what she needs and what she will and will not tolerate well and we're going from there.

We're doing ok. It's hard, it's emotional, but we also know that she's in the best place with the best people caring for her and we trust their judgement and recommendations for care. We appreciate all the love and support everyone is sending our way, and are very grateful for it.

Monday, June 29, 2015

T - 17 Days

I'm scheduled for an induction on July 16th. We have 17 days until the shit hits the fan.

We had our last fetal echo, and everything looks the same as the last one. The good news is that one of her valves that looked small before seems to look more normally sized now and if that's the case it will limit the amount of surgeries she'll need in the future. Her oxygenated and unoxygenated blood seems to be mixing well too, at least according to the ultrasounds.

There's really only so much we can tell from these ultrasounds. While things look ok now, we really won't know what's going on until she's born and they can do an ultrasound on her directly. We're prepared in that the cardiac team will be there when we deliver (hence the scheduled induction) ready to assist and administer whatever help she might need.

The possibilities range from her being fine and having decent enough oxygen levels to come home to things being much worse than we thought and her needing the Big Surgery right away. Again, we just won't know until she's here. And for someone who doesn't like surprises that's pretty hard to deal with.

While my husband had to go back to work after the fetal echo, I stayed at the hospital for my general OB appointments and then took a tour of the pediatric cardiac surgery floor.


I'm glad I did it because I hate surprises, and this way I know where she'll be and what the place looks like and a general layout of the land but seeing all those other tiny little babies hooked up to the machines post-surgery... I managed to hold it together until we walked out and the door closed and then I lost it. I'm glad I did the tour, but it was rough to imagine your baby surrounded by machines keeping her alive, but that will eventually be us and again, I like to know what's going to happen and where we'll be.

So for now we're just preparing as though Helena will be coming home fairly soon after delivery (she'll of course be in the NICU for a time, but we're all hoping that she'll be here and a pretty much normal baby sooner rather than later) and setting up the swing and the changing tables and buying tiny little diapers. It's weird getting this stuff ready not knowing when she'll be able to use it, but I want it ready for her when she needs it.

I was telling my husband earlier that I'm done being pregnant (I fucking hate being pregnant), but at the same time I don't want her to come out yet because that's when things start getting scary. While she's in there she's safe and fine and healthy. When she comes out, who knows.

We're hanging in there. We're psyching ourselves up for delivery and all that comes with it. And we're scared. But we can't control the situation (which is hard for both of us) and all we can do is prepare as best as possible and we feel confident that we've done that. We keep being told that this hospital is The Place to be for things like this, and that we'll have the best care possible. That's all we can do for her, which is really fucking hard.

Thursday, May 21, 2015

The New Team

So first of all, I promise this won't become a "Helena's Medical Saga" blog (I'm working on a new post filled with swearing, judging and my usual snark) but it's just the easiest way to update those who are interested in updates. If you're not, well screw you jerk! Kidding, kidding. Just move along if you don't want an update today. I'll bring the snark next time, I promise.

We spent a good chunk of the day at the hospital yesterday meeting with everyone we'll be working with from here on out. We had an ultrasound which showed that everything but Helena's heart looks great. She's right where she should be size-wise and she's growing and developing well. Apparently she's about 3 lbs 9 oz which is significantly less than I've gained so crapballs.

We met with my new OB and got her up to speed on everything that goes on with ME in pregnancy. I have to go get them some updated bloodwork and then I go back in two weeks for my normal OB schedule. I was kinda meh on her, but whatever. In the grand scheme of things who weighs me and checks my BP and then catches the baby isn't really what's important here. She seemed nice and like she knows her shit, I just liked my regular OB's better. Not a big deal.

We had a lunch break (whoever decided to build a Portillo's next to the hospital - bless you good sir, bless you), and then met with the pediatric cardiologist who we really liked. She saw all the same things our other cardiologist saw and completely agreed with his diagnosis. We got some good news in that her lower right chamber seemed to be not as small as it was in the other ultrasounds, which is what everyone was hoping would happen. It sort of resolved itself and caught up to the rest of her heart which was great. There was still some stuff that was iffy on the ultrasound that is kinda big deal, but they're hoping once she's born and they can do the ultrasound directly on her (rather than trying to see a tiny baby heart through me) they'll get a better look but in general it was a good appointment confirming what we already thought was the case (no surprises is a good thing!). We're going back for one last ultrasound before delivery (I'm almost 31 weeks), and at that time we'll also get a tour of the NICU, pediatric cardiac recovery floor and the maternity ward.

The best thing that came from the appointment is that the cardiologist recommends me being induced at 39 weeks to ensure that everyone we might need available at Helena's birth is at the hospital and ready to jump in if needed. My husband and I have said that our ideal situation would be delivering at the Children's Hospital, but being induced so that everyone is there and ready to go, so this is perfect for us. I was induced with both My Guys and it works well for me (I don't just... go into labor like some people, please) so it's a great plan.

All in all we're still scared and nervous and stuff, but we're feeling better that a solid plan is coming into place and we're going to be with the right people at the right place for Helena.

And apparently we only have about 8 weeks to get our shit together to get ready for this baby, so we gotta get on that!

Saturday, May 16, 2015

Change of Venue

We will be officially delivering at the Children's Hospital. Despite what the surgeon originally told us, our cardiologist feels that as we cannot say with 100% certainty that Helena will be ok to breath on her own after birth we shouldn't take any chances and just deliver there.

I am relieved.

The more I thought about it the more I didn't like the idea of delivering at our local hospital for this very reason. Sure, she might be totally fine when she's born and able to breath on her own and getting enough oxygenated blood but if she's not, she'll need a procedure done that our local hospital cannot do. That'd mean a transfer 30+ minutes away to the Children's Hospital and then I would be at one place and she and my husband would be at another. I wouldn't be able to see her, or be involved in her first few days of care and it would make what I imagine is going to be a complicated situation even more complicated.

My blood pressure tends to skyrocket near the end of my pregnancies (full blown pre-eclampsia with My Big Guy, just really high BP with My Little Guy) and lord knows I'll already be scared and nervous about Helena's delivery - knowing that we're in a place that has all the care she could possibly need immediately available gives me a bit more piece of mind.

So next week I'm off to meet with my new high risk delivery team, and the pediatric cardiology team at the Children's Hospital and get them up to date on our situation. It's slightly annoying that my OB appointments will now be 30+ minutes away instead of 5, but it's a small price to pay to know that Helena will be born in the place she needs to be born in for the best care.

I looked up the doctors I'll be seeing and they are quite impressive, so that's reassuring as well. Everyone tells us that this hospital is THE place to go for pediatric heart issues - apparently it has quite the reputation for it. All these things bring us a bit more comfort in knowing we're doing all we can to help our baby.

But the best sign/omen/whatever you want to call it for us is that the high risk OB I'm seeing is named Helen. Seriously. It's like Helena has one of her angels watching over her already.

Thursday, April 30, 2015

Counting Our Chickens

There's a superstition among Jews that you don't have a baby shower, or think of baby names, or set up a nursery or really do anything to prepare for a baby. It's considered bad luck for your baby. It's counting your chickens before they hatch.

Since Helena will be our third child I'm obviously not having a shower. We have most of the major baby gear from Our Guys and the few items we need to replace we can. I did buy some new girly bedding for her after we found out she was a girl, but that's really all the shopping for her I've done. That was at 14 weeks, so I figured we had plenty of time.

Then we got her heart diagnosis. And I haven't really bought her a thing since.

I couldn't bring myself to wander over to the girl section of Target or Kohl's or anywhere else. Not even when I was already in the store, buying new summer clothes for My Guys. The thought of going into the baby girl section really just freaked me out. I couldn't force myself to go there. I actively avoided it, not even daring to glance in its general direction.

She needed a new swing. Ours died with My Little Guy and we purged it a few Garbage Amnesty Days ago. It wasn't until Amazon had one on a Lightning Deal that I even thought about it. Apparently my cheapness trumps my fears and superstitions because that thing was a great deal and I did buy it. So there's that.

Somehow I came to be almost 28 weeks pregnant and all this little girl had was bedding and a swing (and her brothers'old carseat, stroller, toys, etc). I realized she'd be coming home from the hospital naked because I have bought zero new clothes for her. We have her carseat, but will they discharge her if she's properly strapped in in nothing but a diaper? Doubtful.

I was so excited that she was a girl and I could finally buy those adorable little outfits and then... I couldn't. I thought about it and realized that I wasn't buying her anything because I was afraid of counting my chickens before they hatched. I was scared to buy her stuff because what if something happens? Somehow the buying her stuff was tied to her health outcomes, or at least my fears about them. The Jewish tradition of no baby shower or baby prep suddenly made a whole lot of sense.

We met with our surgeon on Tuesday. It was a great meeting. He was very optimistic and positive and confident and we left the meeting feeling better about Helena's issues. Right now they think I can deliver at our hospital, and that the most she'll need right away is a shunt put in to help her blood flow to the right places. They think once that is in (if she even needs it), she'll be able to come home and grow and get bigger and stronger until we decide it's time to do the major corrective heart surgery around six months or so. The surgeon has done hundreds of surgeries just like the one she'll need and he said there's an over 98% success rate. He said the babies who have had this surgery can run and play and are basically normal kids. There are some minor activity restrictions on them (no competitive sports), but otherwise they're totally fine and grow and develop and live pretty much like any other kid would.

Our baby will come home. She'll need her swing, and her crib, and her bedding, and her toys and of course, clothes. I'm almost 28 weeks pregnant and tend to be induced early for my own health issues. I gotta get my shit together.

I went into the baby girl section of Target yesterday. I cried while picking out clothes. But I picked them out. She won't have to come home naked after all.

Monday, April 13, 2015


I am pregnant with our third child. It's a girl. She has a heart defect.

We went in for our 20 week ultrasound, and while we were excited we already knew she was a girl thanks to a DNA test we had done at our 13 week genetic screening so the big gender reveal had already happened. Knowing the sex took some of the excitement out of the ultrasound, but it's still always cool to see the baby.

The ultrasound tech came in and did everything, and I noticed she was very quiet when focusing on our baby's heart. I didn't say anything, but when she was done I asked if everything looked ok and she said the doctor would in to discuss it with us. I told my husband I didn't like the sound of that, but being a lawyer he replied that they have to say that so you don't get all upset and sue because the tech told you one thing and then the doctor told you another. Ok, that seems fair.

We had the doctor come in, and within about a minute he told us that there was something wrong with our daughter's heart. His bedside manner left something to be desired (along with a lot of other things I complained to the hospital about regarding him), but we were lucky in that the pediatric cardiologist happened to be there that day, and said he would see us. 

The pediatric cardiologist spent over an hour doing an ultrasound of just our daughter's heart and confirmed that it is not right. At that time, he wasn't sure what the exact situation was because she wasn't cooperating with all her moving around, and because she was just so small (she was the size she was supposed to be, but at 20 weeks that means 14 oz, so her heart was tiny).

We had our followup appointment and it was again confirmed that her heart did not form correctly. She has a number of issues, but our cardiologist has reassured us that they are all fixable and while she is in the womb (a phrase that totally skeeves me out) she should have no issues as she's getting all her oxygenated blood from me and doesn't need her heart to do all the work it will have to do when she's born. She will definitely need heart surgery, it's just a matter of when she'll need it (within a few days of birth or a few weeks) and whether everything can be corrected with one surgery or not (depending on the situation she might need surgeries throughout childhood to replace man-made parts that will not grow along with her heart). We will learn more as we have more ultrasounds and meet with our surgeon.

We meet with the surgeon at the end of the month to discuss her diagnosis, what surgery she'll need, and where we'll deliver (our local hospital or a Children's Hospital). The surgeon our cardiologist has recommended seems to be the best of the best which is also reassuring. We'll also have regular ultrasounds with the cardiologist to monitor her growth, bloodflow and her heart and health in general.

It's scary. It's really fucking scary. It's hard, and it's emotional and it's just plain scary. We'll have to hand our newborn over to a stranger who will cut her open to do things to her heart. No one wants to do that. Ever.

We're coping. It's hard, but we're trying to stay optimistic and look at the good news like the fact that we caught the defects while she's still in the womb so we can be as prepared as possible for what she'll need when she's born.

There is still a lot we don't know, and some of it we won't know until she is born, which is mildly anxiety-inducing to say the least. But this is the hand we've been dealt, and we will live with it and we will do all we can to help her.

We've discussed a lot names for this little girl; funnily enough while my husband and I couldn't disagree more on boys names (he likes Aristotle, I like Thomas) there are many girl names we both loved. One name kept coming back to us, and seemed even more appropriate after her heart diagnosis - Helena Jean. My Yiya was named Helen, and my husband's grandma is named Jenny. These are two of the toughest, strongest women we've ever know and this little girl is going to need to be tough, and strong and a fighter and naming her after our beloved grandmas just seems so fitting. She'll have a guardian angel in heaven in Yiya, and one here on earth with our Grandma Jenny. And she'll need them both.