Time to get crackin!

Saturday, April 2, 2011
Swing Baby, Swing

Today was a pretty terffic day. By far, this has been the best day since the day Cayleigh has been born - and I'll tell you why, in a few minutes.

First, we woke up this morning and the kids were pretty well behaved. At 9 am, a local day school came by the House and made us brekfast. We were super excited about getting to go up and see Cayleigh this morning before going to the zoo with the kids. So we got breakfast, headed to the car and drove to the hospital. On the weekends there isn't any shuttle bus transportation so we drive to the garage across the street from the hospital and park.

We get upstairs and settle the kids into the nearby lounge room (right outside the NICU doors) and everybody goes to the bathroom. Nic and I walk into the NICU and back to Cayleighs bed. Then we see her.. she's in a swing! She was rocking back and forth in a tan Boppy swing. It was the funniest thing ever. Everytime the swing went back, her eyes would open. When it went forward, her eyes closed. :) She looked like a real baby. I say that outloud and Mel (the nurse, Melanie, her Primary on dayshift) smiles and says she understands. It's hard to explain but Cayleigh has been in a crib since the day she was born. One of those hospital cribs, with wires, etc and in stable condition, desats every so often and whatnot - delicate I guess. We've taken her out, held her and all - but never handled her like you would a baby without Cayleighs problems. It was a really, really great thing to see.

Better yet? Cayleigh had been doing wonderfully all day and even over the night. Overnight she did excellent actually- and this is the first night she had that harness off. 12 hours on, 12 hours off now. That's the new 'rules' - instead of 23 on, 1 off. So maybe it was causing the desats. It makes sense, if it's pushing her hips in all day long it may hurt her. Mel put her in the harness and she'd been doing good even still. We didn't get to stay too long with the kids (who we let come in and see their baby sister in the swing -but not touch lol) but talked with Mel about how things were going.

Mel showed us a big box, this box is all the stuff (well, a small portion) of what we would be taking home. She then brings us the book of all our stuff we need to go over and get 'tested' on before taking Cayleigh home. How to change the G-tube, feed her with it, give her meds, clean it, care for her, suction her, etc. Alot of stuff. She tells me it's going to be time to 'get crackin' starting tomorrow. To enjoy our day with the kiddos at the zoo and that we'll be doing all the work when we're at the hospital from now on. I think I sat in shock a little while. A good shock, but still a shock. And then ,of course, nerves set in and I question what I now how to do and what I don't. She tells us that one of us will have to meet the Oxygen people out at our house because they will need to come out and see where she'll be and get all of her stuff set up and teach us to use it. That's pretty exciting..and scary.. but mostly just exciting.

It's strange. I'm very nervous even knowing how to clean her G-tube, and having had a lesson on changing it, emergencies and etc, but I'm also very excited. Nic is too. He, of course, like in many things is very confident. I, however, am 'eh' about it. I will, however, be 100% sure about it before we do walk out the doors with her *jumps up and down inside*! We both will be. We're going to be studying, learning - and most importantly - doing. I'm very excited. They don't tell us how long we have, but we feel its coming soon. it's going to be scary but its going to be great too. We ask if I can 'wear' her in the sling I have, but she says no. We can, however, wear her in something like a Bjorn carrier. Just not anything that would interfere with blocking her airways and things like that.

So, tomorrow starts our big day. I called several times today and everyone tells us she has been doing really good. She had 3 "bradia's which is when the heartrate goes down - but they were very brief and she brought herself out of it all by herself! Thats awesome too. I'm very happy. OH and did I mention how alert she has been too? God has really, so honestly answered our prayers. In His timing and in His way, but we are so eternally grateful to Him for loving us and loving her.

Please continue to pray for her. Pray for NO desats, NO bradies. Increased flexibility, increased movements, increased awareness. Pray that the Lord heal her sweet little mind, heal her sweet hips and just keep her in His palm.

Please pray for our entire family. Keep us in your prayers for strength, peace, patience and trust. And for well behaved children :) Thanks!