"Take the first step in faith. You don't have to see the whole staircase, just take the first step." -----Martin Luther King, Jr.
"An invisible red thread connects those who are destined to meet,regardless of time, place, or circumstance.The thread may stretch or tangle,but it will never break."
- ancient Chinese belief

Friday, November 5, 2010


We are home and Junie is doing much better than I had expected and prepared for.
The surgery went well. We got to the hospital a little late because I somehow missed the exit (well, it was 6 in the morning, things look different in the dark!). They took us right back to triage and then to her room. The nurse came in and explained everything to us. We saw the doctors and met the anesthesiologist (who was so sweet and has a daughter about Junie's age). They took her back right at 8:15 (her surgery time). We walked with her to the doors and with the versed in her system, she didn't mind us leaving her at that point. Fortunately, they don't even put in the I.V. until they are under so a lot of stress was reduced beforehand.
The ENT came in at 8:35 to tell us the tubes were in and that Dr. Williams had started with the palate repair. He said she had quite a bit of fluid on both and "a huge ball of wax" on one ear!
At 8:45 the anesthesiologist came in to tell us that Junie was doing fine and had gone under perfectly, helping them out by holding the mask. That's our girl, Little Miss Independent.
At about 10:15, the surgeon came in and told us he was done. He said Junie did great, that he did the p-flap conservatively and that everything looked good. He also told us that he did NOT use the retainer thingee that they made the mold for under IV sedation a few weeks ago (we just got the bill for this today, thankyousomuch!). He said once he got in there, and had done the p-flap, he didn't think he wanted it in there.
So thankful for this doctor, his sweet bedside manner (with Junie and us!)and his very skilled hands!
Until this point, I had held up surprisingly well. My aunt came down and stayed with us which was a great distraction for me, especially since David spent a good deal of the time on his i-phone (why do people love those things so much?!). But the hour between when the surgeon came in and when they brought her back to us was excruciating. Finally, they moved us to her room and then a nurse carried her in about 15 minutes after that. I'm not gonna lie, she looked pretty bad and it broke my heart. She had dried up blood at the corners of her mouth and nose and a (HUGE!) "nasal trumpet" - to keep that airway open- in one nostril.
She was pretty dopey, but when she saw us she started crying. I can't imagine how much it would hurt to be crying under those conditions so really tried to settle her down quickly which she did. She was very "gurgly" from the blood drainage and mucus. They said that she doesn't want to swallow so it pools there in her throat making that sound and then dripping down. yuck.
So the entire rest of that day and night (Tuesday) was spent holding and rocking her, with her getting a well appreciated dose of morphine every two hours, a constant drip of fluids and her vitals checked (which seemed to bother her more than the nasal trumpet!). She cried every time they checked her vitals or messed with her at all, but only for a little while, and fairly easily went back to sleep. In the early evening (as soon as I had changing into my cozy pants), she sat straight up and coughed a bit and then threw up blood all over her gown, my pants and the floor. At that moment, I was thankful for the room directly across from the nurses station! I was absolutely freaking out and Junie didn't like it too much either. The nurses, however, were totally nonchalant and told me it was expceted because of all the blood dripping from her mouth down into her tummy. Expected? really? Junie hated having her gown changed and being cold but again, settled down pretty quickly.
Junie threw up blood 4 more times, causing a change of gown (which she hated!), change of sheets (they switched the crib out for a twin when they finally realized I was not going to put her down) and a good bit of tears.
I was well prepared for the worst of nights thanks to my adopt-cleft yahoo group and I'd say it went a little better than expcected. Not a lot of sleeping going on for the parents but Junie seemed to have her pain managed pretty well and did do a lot of sleeping.
Wednesday morning started out a little rough for Junie. The surgeon visited and told us we'd probably be in until Friday. But she perked up a little when the grandparents and my sister visited. She reached for all of them and let them all hold her, giving my butt a break from the numb/tingling sensation it was experiencing from hours of sitting in the rocker with her! :)
They switched her from morphine to tylenol with codeine mid-morning. They were so anxious for this switch as it apparently has a more even effect on the pain and only has to be given every 4 hours vs. every two hours with the morphine. However, it tastes awful and has to be given by mouth! She hated that and cried and cried every time she had to take it.
Most of that day and afternoon, Junie spent awake. The nurse said that after they have the nasal trumpet removed (which they took out in the morning)that they usually perk up. She didn't exactly seem "perky" to me, just awake but tired.
Around 5, the surgeon, his PA, and two others (students?) came in again. This time, Junie was sitting up on my lap, eating pudding. When he said hi to her, she raised her big ol' restrained arm and waved to him! I think she must have known how much was hanging on this visit. After this visit, he said she could probably go home in the morning if she's still doing so good.
Then, as evening came and she was still awake, I got a little worried about her being up so much and wondered if the drugs could be causing it. About 6 (time for her next dose), they said they'd ask the doc about switching her to Lortab to see if that had a different effect on her. I quickly called my sister to get her advice. My sister, Connie, is a pharmacist at Hughes Spalding, the CHOA hospital in downtown. She told me that at her hospital, they almost only give Lortab and that she thinks it actually works better than the Tylenol 3 so that made me relieved. Having bad reactions to codeine drugs myself, I thought maybe Junie did too and that the drugs were keeping her up.
So finally around 8 (two hours after she was due for meds!), they brought in the lortab. Apparently this tastes awful too and she fought taking it. However, even though she was not sleeping at all, she really didn't seem to be in pain.
Well, this night proved to be rougher than the night before. She was fitful the entire night. She'd lay on me, fussing, close her eyes for a few seconds and then bolt up fussing more. Switch positions, close her eyes and fuss again. She really didn't seem to be in pain, just not able to get to sleep. Whenever she did finally get to sleep, almost on cue, a nurse would come in to check her vitals. Or one of the godforsaken monitors would start beeping. And EVERY time one beeped and beeped I would have to call them and tell them it was going off. And EVERY time I pushed the call button, instead of coming in to turn it off (really? can they not tell it's beeping from the nurses station?!?!?), they would loudly come over the intercom, "do you need something?". And she would wake up. And every 5 hours, I would have to call the nurse (the same nurse that came in every 2 hours the previous night like clockwork to give the morphine) to tell her Junie was an hour overdue for her pain meds.
So, this night proved to be the most taxing. She finally fell asleep on David around 4:30 and slept for a few hours. The surgeon came in at 7:30 to check on her and David told him what a night she'd had. So then he'd have to see how she's doing later to see if she could go home in the afternoon.
I ordered Junie a bunch of different food that A.M., knowing that her eating food and drinking were our ticket out of there. She didn't want anything. She wants to be holding it and feeding herself but she CANNOT. She has on her arm restraints and we cannot risk her damaging her stithces. All day she would say "more" in her cute little way and do her sign for drink. And all day I would point to EVERYTHING we had. Yogurt? shake her head no. Apple juice? No. Oatmeal? no. Gatorade? Ice cream? Milkshake? Soft eggs? Water? Pudding? No. No. No. Then she'd say more. and fuss. Poor thing. I don't know exactly what she wants, she can't tell me.
We got a wagon for her around lunchtime and David wheeled her around while I grabbed some lunch in the cafeteria. She enjoyed the wagon ride but as soon as we got back to the room, fussy again. I brought her down to the playroom and showed her all the toys and she shook her head at all of them. She finally agreed to a "baby mozart" type DVD and we went back to the room where she continued to ask for something and then shake her head at all her options!
The sweet sweet day nurse agreed with me. She was just miserable to be there. Not in pain, just miserable. So at 4, we switched her to regular Tylenol (!) to see how she did on that. We got our going home instructions, prescriptions, packed up, and at 5, headed for home. As we entered the parking deck we asked Junie if she wanted to go home and she nodded "yes". And finally, our first glimpse of a smile in days as we put her in her carseat and said "Junie's house!?". A true blessing that there was hardly ANY traffic at 5 o'clock in Atlanta.
I (and Junie, I think) was SO happy to see my boys. It felt like I'd been gone much much longer than 3 days! Junie seemed so content to be here, too.
She was tired but not too fussy and stayed awake until 8 for her next dose, Motrin (at this point she's been on OTC since 4).
This afternoon she had a few more bites of food, colored with markers, watched her brothers do stunts in the family room (one of her favorite things), barely choked down all her meds at bedtime and then went right back to sleep. If it's true that sleep heals the body, she should be back to 100% sooner than I thought!
I too feel like I could sleep the day away so please forgive the less than perfect post. I just wanted to get down what I could so we could remember this big event and what a trooper our girl is.
We are so thankful everything has gone so well and that she's home, comfortable and now with a palate! :)
Pictures to come!

Monday, November 1, 2010

Prayers please!

Tomorrow our little Junie-bugs is going in for her BIG surgery: palate repair, p-flap and tubes. Please keep her in your thoughts and prayers!
Her surgery is at 8:15 so we will need to arrive at 6:15 (yes, A.M.) and she is expected to be in the hospital for 2-3 nights.
My brave mom is home with the boys, so pray for her too! :)

And, because I know a blog without pictures is boring...