charleston=( and christmas=)

merry christmas love=)

this is my favorite day of the year. our sweet Savior has come and every twinkling light and decorated tree is celebrating it. happy birthday to the One who holds us close and knows our every step and loves us irrationally. the One who sacrificed Himself to save us. to be with us forever.

oh how He loves us.

may we honor You and bless You Lord. may our celebrations bring you glory.

we've had such a great christmas so far. you and daddy are taking a nap upstairs. i'm sitting in gigi's den with a fire in the fireplace, watching the twinkling christmas tree, and listening to christmas music playing in the background. and guess what else. i'm watching the snow fall while it decorates the woods surrounding gigi and grandaddy's house with white. it's a pretty big bonus since gigi and grandaddy's house is in georgia. i can't remember ever having a white christmas growing up, so this is lots of fun=) pictures and videos to come.

let's talk about charleston. i've been putting it off because it makes me very sad and scared to talk about it. but here we go.

on monday they told us that they saw stomach in your chest on the x-ray the day after surgery. i talked to dr gully who then called dr rodgers at uva. quick refresher: dr gully is my boss and your pediatrician. dr rodgers is the surgeon at uva that did your first 8 surgeries. dr gully told him what happened, what dr saad did during surgery, and what they saw in the x-ray after surgery. in a very diplomatic way he said if it were his child, he would get a second opinion at musc with dr andre hebra. we would basically trust dr rodgers blindly because we were with him for so long and we just love him. so dr gully called dr hebra and told him everything that had gone on and that dr rodgers pointed us in his direction. he sang dr rodgers's praises for a minute and said he was basically the guru of diaphragmatic hernias, which we already knew;), and that he could see us before christmas if we wanted. you were discharged from the hospital tuesday and we had an appointment with dr hebra in charleston wednesday at 11am. we we left at 6am and made the trek down i-26. he was super nice. so was his nurse practitioner. and the gyst was (again, in a very diplomatic way) that he obviously wasn't the surgeon in the OR with catherine and he wasn't necessarily saying dr saad made poor decisions, but just going on your history he would've done things VERY differently. which makes us sick. he said that the gortex patch wouldn't have pulled at the diaphragm and caused another hole, and that it shouldn't have been touched and should have been left in there. and that he didn't think your diaphragm could've grown enough in 2 years to have healthy tissue to be sewn back together, and he's concerned that whatever tissue dr saad did sew back together (scar tissue, maybe?) won't be strong enough to hold and that you might re-herniate every 6-12 months. and he's not sure if the hiatal hernia had been there for a long time or if it happened as a result of taking out the only strength (the gortex patch) your diaphragm had...meaning the gortex patch was taken out, the diaphragm got "loose" and the stomach slipped up into your chest. and that he still would've gone in through the chest instead of the abdomen. that if the stomach had already been in the chest, you would've been able to see it if you'd gone in through the chest. so again, he doesn't know if dr saad did everything right considering what he had to work with, but basically it doesn't sound like that's the case. so at first he said that as long as you're stable he wouldn't do surgery at all, that hiatal hernias can be perfectly fine and cause no problem, and he DEFINITELY wouldn't do surgery now unless he absolutely had to. buthe had us getanother x-ray when we let his office just so he could see what all was up in your chest, and when he got the results he called us and said it was much more impressive (not in a good way) than he expected and he would definitely have to do surgery on it. but again, hopefully after you're fully recovered from this one. i'm guessing that means about 2 months, but i also think i might have just made that number up. after he saw the x-ray he asked me to get discs made of all the x-rays they had done of you during the past week and mail them to him. which we did thursday morning. he wanted to look at the x-rays to figure out if the stomach was up in the chest before that last surgery, or if it happened as a result of the surgery, and he also wanted to make sure he agreed that it was only the stomach that was in your chest now and no intestines. and he said that after he reviewed all of those, he would call us back because he probably would get a CT of you to see exactly where the hole is, and what is where in your little belly and chest. they tried to avoid a CT at greenville because it's an outrageous amount of radiation, but it makes sense at this point that dr hebra thinks he needs one. they emphasized that somebody was on call 24/7 and for us to call if anything is worrying us or if you're showing any signs of bowel obstruction. it scared us out of our minds, to be honest with you. the drive back home from charleston was not so fun because i was just staring at you the whole time wondering if you were really ok. but we started feeding you through the tube again that night and it really has perked you up. we did end up coming to atlanta to be with our family at christmas (they said there was no reason we shouldn't come) and you're doing much better. more energetic and less pain and closer to normal. you're much fussier than you were before, and though you're still a sweet angel you're not quite as sweet as before. i guess i can't blame you-having people do painful stuff to you for 5 days straight will wear a girl out and teach you to be pretty defensive.

so we're waiting. hopefully we'll hear next week when dr hebra wants the CT and we'll know more after that. in the mean time, we're praying for no complications and no bowel obstructions and complete healing from the surgery at greenville. and this next surgery will perhaps be your biggest and most intense one so we're praying that all will go smooth with that. that it will be successful and your insides will be fixed for good and that you will recover quickly and easily.

so yes, we're terrified. and sick over the fact that maybe we should've gone to charleston to begin with. but honesty, we had no idea. we're trying to be thankful that you're recovering well from this surgery, that we seem to be in good hands now, and that we have dr gully to run interference in ways that me as your mommy just wouldn't have been able to do. let's talk about dr gully for just a minute. who could've gotten two surgeons on the phone that quickly and made things happen like that? she's really just wonderful. i don't know how else to describe how i feel about the fact that she is in our life. and i think she loves you like you were her own. i'm just so thankful. and no, she doesn't read this blog so i'm not looking for a raise here or anything=)

alright. onward we go. let's talk about christmas again. last night santa brought your surprises to gigi and grandaddy's house, since he knew that's where we were sleeping. so this morning we saw what he brought you and you opened presents from mommy and daddy. then we went to grandmother's house and had christmas over there. lots of fun seeing sweet family we don't get to see very often. tomorrow we will do christmas with both sets of grandparents and all of your aunts and uncles. so tomorrow is a big day! how fun=)

i love you angel. i am very sure i'm forgetting things, but i'll remember and tell you later.

mommy

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