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.