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.

*tears*

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"

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