ain’t nuthin but a g- tube

Hope needs this onesie like now.

ain’t nuthin’ but a g-tube baaaby. No – we literally did nothing but get this g-tube this week 🙂 We spent every day at the hospital without intending to do so, but the payoff is huge progress.  We made it in for the surgery and it went off without a hitch.  I was so used to having a surgery coordinator give me updates every 10 minutes on the slightest thing that I asked John to go up to the receptionist and request an update…for a 20-minute surgery, which he did.  The receptionist told him politely, “It started at 2:00.  It’s 2:15.  Everything is fine.”  Hope was finished a little while later and we met with the surgeon and the anesthesiologist and then we got to see Hope in the recovery room.  To our surprise, we went back to the post-anesthesia care unit and ran into Katie, a nurse that took care of Hope in the CICU and now works in the PACU.  It was a relief to see a familiar face.  We’d never gotten to watch Hope wake up from anesthesia before because all her other surgeries were open-heart and she was out for a long time afterward and kept very comfortable for a while.  The nurses taking care of her went out of their way to ensure they helped keep her ahead of the pain and didn’t rush through when they could have.   We were so grateful to have been in such good hands that day.

Hope waking up after surgery – so peaceful – she kept on channeling Snoop as she napped for nearly all of the in-patient stay.

We got in so quickly that we had mixed messages about how long to expect to stay.  Of course, trying to predict that is a bit like using a crystal ball – it all depends on how Hope responds.  Would she have any rhythm issues during the surgery and need to go to the CICU?  If so, that would have meant at least 3 days to get home, 1 -2 days in the CICU then a day or so on the floor is our best guesstimate.  Would she not respond well to eating with the G-tube?  Would she struggle with pain?  Would something that I can’t even begin to image happen that would cause her to stay in-patient longer?  I thought the best approach would be to pack ourselves up for at least staying through the weekend and at worst staying a full week.  To our delight, Dr. L (the doctor that really did all the string pulling to make this happen so quickly) told us we would watch overnight, then start feeding her Friday morning.  We’d slowly ramp up her volume to her usual rate/amount and if by 5 p.m. she had tolerated this ramping up process, we would be going home on Friday.  We couldn’t believe it – 24 hours?!?  It seemed too good to be true.

We had G-Tube University scheduled for Friday afternoon, so John and I didn’t get our hopes up too terribly high.  We settled in at least for one night and the next day Hope tolerated every step in her ramp-up schedule beautifully.

Hope channeled her inner-Snoop this week and went gangsta on this g-tube surgery – surpassing all expectations. Before we knew it we were signing discharge papers and packing her up in a mad hurry.  We felt so uneasy – at any moment someone was going to walk in and tell us that they’d made a mistake and Hope needed to stay a few more days just to be safe.  But no one stopped us so we ran out the door like we stole something before they could change their minds!

We came home and once again the hospital luggage exploded all over the house as we quickly tried to unpack. It has been amazing being home so quickly.  Hope is a little tender and sore from the surgery, but in general is her same happy self.  She is eating about the same as she was before and maybe even a bit better.  She’s a little less puky and we aren’t struggling so much to get her volume goals met.  It’s amazing what happens when you aren’t spending the whole day wiping up puke and cleaning a baby and clothes etc.  We have our first speech pathaologist appointment post-Gtube so we are excited to see what Hope does.  We’ve been prepared that the path to recovery from the oral aversion she has is likely years long.  We are trying to keep our expectations in line with that, but we are excited nonetheless.

I took some leave from work so John and I could have a mini-maternity experience for two weeks and, so far, the first week of that has been gobbled up by the G-tube procedure so we are hoping that next week goes a bit smoother.  We are working on getting ourselves and the house organized so that taking care of her runs as smoothly as possible.  Figuring out our routines is a real exercise of trial and error on both our parts, but it’s getting easier every day.  Of course, we are still trying to make time to get Hope-arazzi pics taken frequently enough.  Her smiles and laughs have been amazing.  She’s also growing like a weed!

February is Heart Month and CHD Awareness Week is February 7th – 14th. John will be strutting his stuff at this fundraiser walking Hope down the runway. Contact me for the link to buy tickets – we’d love to see you all there! Hope is going to show off her scars in nothing but a tutu and pearls 🙂

PCHA-OH is proud to host the first Conquering the Runway: Heart Hero Fashion Show for children with congenital heart disease in Cincinnati. We will be inviting up to 25 CHD survivors to become “models” for the day. To give these children a literal platform to proudly combat their disease, will inspire other children who aren’t on the runway to feel empowered and proud. By “conquering the runway” these children will be proud of themselves, their scars, and all they have overcome. Join us for our 2018 inaugural event! Come celebrate children with Congenital Heart Disease (CHD), raise funds and awareness. Watch these heart heroes strut their stuff across stage and wrap up CHD Awareness Week in style!

There will be appetizers, raffles, & a silent auction. Fun for all ages!

1 in 100 babies are born with a Congenital Heart Defect & CHD kills more kids than all pediatric cancers combined yet gets 1/10th funding. The medical community has made great steps with limited resources imagine what could be done with real research money. The first step is awareness. Feb. is CHD Awareness month.

Please feel free to share this month to help spread awareness. You can also use the CHD Aware frame on FB.

Now that you’ve finally read through all that Jazz – the prize!!! The Hope-arazzi pics!!!

P.S. we have delayed pics of her in a new unicorn costume for her six month pictures.