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!