"I love the passing of time..."

That is a quote from a song Shawn Colvin covered, such great lyrics, such a great artist. All-time faves. It's sad to admit, but I do love the passing of time, I hope I won't regret it someday, but I just keep thinking, I can't wait until a few more months has passed, then Peter will be happier...maybe he'll get off oxygen or something, or at least he'll be able to sit up and hold things and we can go outside...etc. I think, Well, maybe I'll look back and wish I could have this time back. And then I think about that, and think, mmm...I don't think so. I don't mean to be a cynic, I love Peter's baby stage, and it's already been extended for me because of his developmental hurdles, but I just can't wait for him to be older for his sake, not so much mine, the farther we get away from the NICU, the better. I don't know, it probably doesn't make sense. I don't feel down about it either, even though it sounds that way. Speaking of the passage of time...
Peter is 5 months old tomorrow, so I'm going to give a little update. I know I don't give progress reports very often anymore, it's really just because I can't pay such close attention or it doesn't seem like he's making much progress. When I do it few and far between, there is lots of progress and makes me feel better. Just a little psychological trick, I know, but it does wonders. Anyway, back to Peter...

Aren't these pictures so adorable of him holding the bottle? He's really not able to hold the bottle, but the pictures look that way and I love it. He is still only able to handle a few drops of milk, maybe a teaspoon on a good day, but he is leaps and bounds better at letting things in his mouth, and not gagging. Recently, we went to a special clinic at Primary's where we met with doctors, nurses, therapists, a psychologist, a dietitian...over 7 professionals for eating problems within the course of 2 or 3 hours. They will start to monitor Peter and offer what help they can. One of the suggestions they made was to try seeing if Peter has a milk allergy. Not lactose, but a protein in dairy products. Peter has this awful retch that he does several times a day, even though he has nothing in his stomach, and no one can tell us why or how to help it. This GI doctor is hopeful that this may be behind some discomfort and maybe even the retching. It is a stretch, but we'll try anything. So, I'm off dairy products and it is amazing how hard it is to avoid. I mean, I love milk, and about died in Italy without fresh milk. But this is so different. My orange juice has a milk product in it, crackers and cookies, cereals...most of them have some milk product in them, even hot dogs! I am turning into a crazy label reader. But Peter can still have my milk if I don't have dairy, and then I just add a little formula to my milk to help him gain weight, so they gave me a special non-dairy formula that is around $50 a can. We'll see. It's funny because most moms would hope that their kids don't have a milk allergy, but I'm actually hoping he does! Anything that will provide answers and solutions.

Peter has had therapy almost every day (M-F) this last month. I feel so fortunate to have a jump start like that, because with the new year starting they will only be able to come once a week or maybe every other week, but they've trained me a little what to practice with him. He is starting to get really good at holding his head up for longer periods of time and with less wobbling. He still needs a lot of support, but he's come a long way.

These leg braces help him feel pressure on his feet. A lot of times sick babies get overly sensitive and it inhibits their progress developmentally. This helps to desensitize his feet, and help him feel pressure in his joints as well. Look like torture, but once he got over being afraid of the sound of the velcro, I think he actually liked it, for a few minutes at least!

Here is a little vid of Peter with one of his therapists.

I just had my sisters sing and play the song, "Star of Bethlehem" over the phone to me. Ben is gone at his family Christmas party, and my sis was supposed to come hang out but she had a sore throat, so she stayed away and I was bummed, even though I was grateful. So the sibbies were hanging out, making carmels and the like, when my sisters called me and said they were singing (which we always do after Sunday dinners) and that they were going to let me join over the phone. I thought it would be annoying, you know how hard it is to hear someone play a song for you over the phone? Anyway, it turned out to be my favorite Christmas experience thus far. I just stood in my living room, holding Peter in the dark while looking at the Christmas tree. Last week was a highlight of another kind:

Our first date!

I was wondering how it would go down because a: it was the first time leaving him, even though it was with a more than capable NICU nurse (thank you!), b: it is just such a whirlwind to get ready and out that as we drove away, I wondered when and if I would be able to just simmer and enjoy the time we had before we had to come back. It ended up being absolutely perfect. We went to Market Street, there is one out by our house in SJ, and the food was really good. Ben was a shocker, ordered sea food for appetizer, soup and his entree! He has really changed. The funniest thing was how much he loved it, he talked about it a bit. I loved my food too, but most of all, I just loved talking and talking of course. At one point I was so animated and talking so energetically that Ben and I burst out laughing.

On a different note, I didn't have much desire to think of boy decor for Peter's room, and I ran out of time anyway. But once we were home from the hospital, we hung up this map of the world that has bright colors on it. It has turned out to be the best wall hanging, what else can be intricate and detailed enough to keep your attention over hours and hours of rocking a baby? It has even sparked interesting conversation that we wouldn't have had otherwise. For example, this morning? Singapore. I love maps, and Ben told me this morning he loved having it up so much that he wanted to rotate every so often to blown up maps of different parts of the world. It's a good thing he doesn't really read my blog much, it's turning out to be pretty revealing for him. :) I have to show one more thing in Peter's room, this darling little frame with his name on it. It has a little boy with a cape on it because Peter is such a little superhero. Thanks M! By the way, I know flowers aren't very boyish, but they are mine, and I live in that room, so there they stay. Aren't they stunning? They all opened up this last few days. Perfect timing for Christmas.

Peter fell asleep in good light a few days ago, these are my favorite pictures of him so far.

"What's the matter Norman?"

Since I'm not funny, it's a good thing my husband is, or our life would be pretty dull. When we were dating I worried he was even too silly, but now I'm just grateful for all the silliness I can get. Since we found out about Peter, Ben has gotten progressively funnier to me, maybe that's how he copes with crisis, I don't know, but it's definitely helped me. It is particularly evident when he plays with Peter. When I play with Peter, I am all goo goo ga ga, but Ben treats him like he is 17. I love to listen from another room to the ridiculous things he says to Peter, as if he is trying to entertain himself as well. I don't have a good example of this right now, but I do have a pretty funny movie of Peter and Ben flashing gang signs.

Last week Ben asked me, "So, when do babies start to go to sleep at 8:30?" Since I didn't have a clue, I called my sister. "Ben wants to know when babies start to go to sleep at 8:30?" I think she thought I was joking because she started laughing so hard, then laughingly told her husband who started to laugh, and both of them laughed laughed laughed. It was all very funny. Anyway, we've been trying to learn Peter's routine. Since I have been a completely indulgent parent so far, I've let him do whatever he wants whenever he wants, but lately I feel like he hasn't been getting the sleep he needs. After a few days of trying hard all day for naps, I think he is doing better. Still going to bed late, but not with an exhausted drawn out fit first. We'll take it.

Last night Ben and I had our first night out in the car with Peter. We did the drive-thru at Panda Express, and as simple as it sounds, it was so nice to go somewhere together. I can't wait to take Peter with me places. One advantage to all this is how much it leaves to look forward to. I have a long list, and little by little I get to check things off, it's as exciting as counting down to Christmas. Another first this week: our first walk in the stroller. Peter didn't love it too much so it ended early, but we had to get out of the house, and just the fact that we made it out was all that mattered.
I'm loving the Christmas season from the inside of my house. It has really kept the stir craziness at bay. I feel like I could do this for a long time. Thanks to Pandora, I never get tired of Christmas music even though I've been listening to it for months now, and I have it going pretty much non-stop.

nevermind!

So I thought about maybe wanting to be a nurse someday? Today I watched a quasi-surgery performed on Peter at our check up with his surgeon. She had to dig out his stitches that were starting to surface and poke through his skin because of the infection risk. As she dug into his skin, pushing so hard and deep with pliers that he was bleeding quite a bit, I almost vomited. Maybe because he's my son, and he was hysterical without painkiller, sedative or numbing, or maybe I'm just not cut out for the job. At any rate, he is doing fine and not needing surgery again for awhile. What a trooper, my little hero.

playing house and nursemaid

When I was young, I had marathon sleepovers with my cousins. We would alternate houses for 3 or 4 days until we were probably fighting and we would finally separate until the next time. Being the oldest of a pack of four (me, my younger sister and my cousin and her younger sister) and having a propensity against growing up, I played house and dress up much longer than most girls, probably up into ninth grade. However, our games did progress as I got older. I remember a favorite game with my cousins which involved taking all the dolls and stuffed animals and relocating them throughout the house. Then we would go on searches to the far reaches of the world and find a Barbie in Antarctica (the basement) who was freezing and had to be rushed to our hospital, or a stuffed bear who was climbing a mountain (upstairs) and fell, breaking his leg and needed rescuing. We administered to all kinds of diseases and ailments, usually finding the appropriate cure in an old ace bandage or a band aid, or a shot to the leg with a pencil. It was all very dramatic and important. As much as I liked this game, I never wanted to be a nurse when I grew up. I wanted to design clothes for children as early as second grade, and I always wanted to be a maid. I've been surprised to find how much I like playing nurse with Peter. It does feel pretend sometimes, but I like the scheduled meds, syringes, and the diagnosing of his symptoms. If I ever had to go back to school I would definitely consider nursing to work in the NICU. I feel kind of like I'm playing that old game, especially when I'm laden with Peter's equipment. This week I finally bought a baby carrier and put Peter in it so I could use my hands. I was quite a picture walking downstairs, too bad I didn't take one. It won't be the last time so I'll eventually blog it. It was my first real time going downstairs with Peter by myself, other than going to the doctor. I had Peter in a backpack on my stomach, his feeding in a backpack on my back, his oxygen monitor in my right hand, and the 50 foot line on the oxygen tank so we didn't have to carry that too. It sounds far from it, but it was liberating. I put away the dishes, cleaned up the kitchen, started laundry, cooked the first real meal I've cooked alone in a month, all while doing a dainty little dance over and around all the cords to the tune of my ipod "relax" mix. Even though it felt a little like playing house, I feel like I'm getting my life back, not necessarily my old life, but a life I like very much. I've learned I can pump while Peter is on my lap which makes life easier, and when he's in the carrier I have even played the piano. Ben's let me sneak out a couple nights while he watched Peter. A week ago I took my dad's ticket to the Messiah Sing-In at Symphony Hall with my sibbies at the last minute. I love singing the Messiah. Then later in the week I went to a 10:10 Twilight with my cousin and sis.
Some other things that have been great lately are putting up Christmas (thanks to the fam for bringing me a perfect 12' tree they found and cut in Fremont), and listening non-stop to pandora.com (people: this is the most fantastic thing ever. you must try it).
Last week I was about to post how I was totally on top of my life, and then I stayed up too late that night and the next day Peter got a round of immunizations, and let's just say I wasn't on top of my life anymore. But that is life, the unpretend way I guess. Peter also got this crazy and exclusive shot last week that is apparently more painful than his immunizations, so he was really a trooper with so many shots. (this shot is $1000!! He gets one per month for the next five months...wow.)

Awhile ago my friend asked me about good books for boys. I didn't really have an answer because I've never thought about books in gender organized categories. Then I got thinking about it and wondered about all my favorite books and how my son would view them. Which would he love and which would he think were boring or even girly? I tried to think of boy books for him and I've only come up with a handful, although of course there are so many that can go either way, and some of these too. Most are classics.

Saint George and the Dragon, Margaret Hodges

Pecos Bill, Steven Kellogg

Go, Dog, Go!, P.D. Eastman

Owl Moon, Jane Yolen

Sir Cedric, Roy Gerard

and of course, Alexander and the Terrivle, Horrible, No Good, Very Bad Day, Judith Viorst

Then there's Where the Wild Things Are, Runaway Bunny, No! David, Corduroy, Peter Rabbit etc., Little Bear, Elbert's Bad Word...
What are some of your favorites? Boy, girl, or whatever?

Happy Fourth Birthday!

Month that is. Peter is four months old. Ben has told me lately how much I have changed since Peter's birth. I hadn't stopped to think about it much, but as he said it, I started to see how I'm different. Children are little catalysts, and Peter seems to have magnified the "normal" experience, whatever that is.

my cup runneth o'er

Speaking of Thanksgiving, thank you to everyone for being so understanding. The doctor says it is better to overprotect at this point, so thank you, thank you, thank you! for your help and patience.
What a week to be thankful. My heart was brimming on Thanksgiving night for all the blessings that are mine. Ben and I took turns seeing our families and it was wonderful. Absence makes the heart grow fonder. Also, this week we were able to turn his oxygen down a little for the first time in a month! It seems like he's not going to make progress and then all of the sudden he does fine with less. Here is another movie, this monkey is the key to Peter's undoing...more later.

"Every party has a pooper, that why we invited you..."

With the holidays in full swing this week, we are declaring ourselves the official party poopers of the season. Unfortunately, the flu season is also in full swing, and there's nothing like a gathering of lots of people to spread the love and the germs. We've already missed one family party, and we are trying to figure out just how to get through the season without offending the whole world! How are we doing? Well, the best is yet to come...we are going to quarantine Peter until the holidays are over and people aren't in such populated, germy places. I am not usually a germaphobe, I will let you eat off my plate, let you borrow my toothbrush, I have even shared suckers and gum (although let's admit, that is sick) but I can't share my baby with your germs. What? you're not sick? If you still want to visit Ben and me, you can! Just make sure you don't live with anyone who is sick or recently has been sick, or knows someone who is sick, or knows someone who has recently been sick, or even who thinks about being sick, or had the FluMist, or might get the FluMist. I'm telling you, we are really Grinch-ey party poopers. "I wouldn't touch you with a thirty-nine-and-a-half-foot-pole!" I haven't even seen my sisters in weeks because they or someone they live with is sick. I wouldn't deprive myself of them under any other circumstances! You're still not offended? Great! Oh, by the way, we aren't letting babies or kiddos in the house...Peter's cousins haven't even met him yet and won't be able to until spring. Party pooper? You bet! But really, who would want to send this little guy back to the hospital? We'll see you after hibernation.

I found this beautiful quote in Memoirs of a Geisha:

"Grief is a most peculiar thing; we're so helpless in the face of it. It's like a window that will open of its own accord. The room grows cold, and we can do nothing but shiver. But it opens a little less each time, and a little less; and one day we wonder what has become of it."

I think it's very astute, and there are so many kinds of grieving, but it seems true. I don't know that I'll ever get to the point of wondering what has become of my grief for my mother, but when I've grieved over other things, it's certainly been that way, and the window definitely opens of its own accord. Sometimes it just comes out of nowhere. I had a realization about grief this year when I found out the news about Peter in utero. I felt bereft, but I hadn't actually lost anything, and I puzzled over it until my dad pointed out that I was grieving the loss of my hopes and expectations. Even the loss of my future and the future of the baby, at least the future I had anticipated. Since then it has been a useful way to look at the world whenever something doesn't happen the way I hoped, and to know that grief is just a process, another cycle inside a much bigger cycle. I'm to the wondering point with Peter now. I'm so used to the situation that it feels homey and comfortable, when it used to feel so foreign. I have a friend who has to be very careful with her son for different reasons and she's had a similar experience. The beginning was so hard, and all you can do is shiver out of shock because the cold comes on so suddenly and you don't yet know how to warm yourself. Now she is used to it and only every so often does the window open and make her remember that it is hard and harder than it was going to be. I feel that way, too.
On Friday, we made the trek to Primary Children's to visit the Cardiologist. It's a long drive but not bad for me, especially since I'm used to it. Peter on the other hand, has a hard time in the car seat because of how it pushes his head forward. If he ever starts to cough and gag, the car seat makes it ten times worse and we've had to pull over mid-trek a couple times to pull him out until he can breathe better. Plus, there aren't a lot of options to calm him since he can't take a binky or a bottle, and you can't hold him in the car. So you can imagine how thrilled I was when he slept the whole way home, even in the worst stop and go traffic. As we rounded the last turn onto our street he started to cry and I was so happy that he had done so well. I reached back to put my finger in his little hand. This is something I have seen hundreds of times when I lived in Italy, "Dammi la manina," when Asia was unruly in the car. I was always amazed when it worked, it's such a simple thing. He seemed to calm and I had one of those moments where the window opened, and I remembered the grief I had for so long when we were trying to have a baby, this was one of those moments I longed for. It was a strange time to remember it, but that is how it works. Anyway, here is my favorite view of Peter, for some reason he just looks sweeter and more handsome when I am holding him in my arms.

Who is that?

Today I ran (seriously) across the street to get my mail, first time since we've been home. I had to take advantage of a sleeping Peter moment. As I was going through my mail, I saw my new drivers license had come, which I had totally forgotten about. So, I ripped the envelope with the curious excitement of opening a report card only to find a drab looking little card. My last one looked much cooler. Oh well. Then I noticed two words: GRN, BRO. For a particle of a second I thought, "what are those words about?" and then realized they were about me. I am not the same girl I once was. My eyes are not hazel, my hair is not blonde...anymore. Weird.

"And of some have compassion, making a difference." - Jude 1:22

So, it does get better. I have joked that it couldn't have gotten much worse, but I feel bad saying that because we all know that it could have been a lot worse. Easier to say though with another week under my belt. Quite the learning curve, but now I think we have it under control. No more unwarranted trips to Primary's. It seems like we are at the end of the road in some ways, and looking back, we see how we've been carried. Thank you all so much. I don't even know who some of you are (Liberty treats on my porch months ago?), but you know who you are and we thank you for all the little things. We couldn't have done it alone.

"And sweetly sleeps my little boy," he looks so angelic when he is asleep. Here is a video of him trying to smile, and of him moving - it might seem like normal baby stuff to you, but for Peter it is big time! The therapists are here 4 times a week to work him out, and catch up lost time. It is pretty awesome that that is available to us, God bless America...we are so lucky. In a developing country Peter would never have made it. It astounds me. Speaking of, I never put in my two cents about the election because it was so crazy, but Ben and I voted early so we wouldn't have to worry about it. I am glad the election is over, but it was so exciting. What an amazing time to be alive.

A link to some really cheap diapers, size 1-2:
http://www.amazon.com/Huggies-Disney-Snug-Baby-Shaped-Diapers-8-15lbs/dp/B0012UI3YC/ref=sr_1_3?ie=UTF8&s=baby-products&qid=1226198679&sr=8-3

Peter's First Week Home

For a first week home, we sure spent a lot of time at the hospital! Here are some pics of the high points of what I think was the hardest week of my life:
Putting Peter in his car seat, he looked like a normal baby! I was a little frightened during discharge, though I didn't show it. I just wanted someone to hold my hand and tell me everything I was supposed to do. It took three of us to carry Peter to the car, you can see Ben laden with the oxygen tank and the feeding pump. Man, it is a chore to go anywhere. Thank heaven for a stroller to lug all his gear when we have to go places. I don't take Peter around in the house, we are happy in his bedroom and the hallway. We get almost daily deliveries from Intermountain Homecare, what would we do without them? This is our primary nurse Bonnie, she admitted Peter on his first day and was one of our favorite nurses who took a real interest in Peter's care.

This is Peter's much needed bath last night, given by Ben alone. We had been just a teeny bit preoccupied this first week by hospital visits, doctor visits and trips to the ER to have time to give him a bath, poor kiddo. Look at those eyes. I love hooded towels! He will love it too when he gets older and can run naked through the house with a cape-towel like my sibs and I used to.Peter has had more awake time since we've been home and has started to smile for real. It is such a relief to feel like he is having some "joy in his humdrum life" finally.

Anyway, the hospital was a piece of cake compared to this first week. I received a blessing last night and the man that came to help brought his wife because they had preemie twins in the NICU at UV. She said it gets so much better after the first week. I am praying that is so. There are a lot of experiences I would be happy to never remember ever again. It's so hard to see your baby in pain. There was one moment where I thought, "God, I know I'm stubborn and I'm not humble enough, but don't take it out on my son!" Like he was the agent to humble me. I know that isn't true totally but the thought was there. I love the song from The Secret Garden, "Race You to the Top of the Morning," it used to make me cry to listen to and think about Peter. Colin, the sick boy, is sleeping. His father comes in to see him before going out of town, and reads him a story. I'll try to upload the song to the side.
I was so tough while in the NICU, especially after the first month. After that I was the one comforting other moms and such, and feeling so strong and stable emotionally. The stress just skyrocketed with him home and out of sorts. I would have loved to be back in the hospital at that point, just so long as he was well. Ben and I were hearing his monitors beeping and alarming in our dreams. When we walked into Primary Children's with Peter on Monday night, a wave of relief rushed over us and we felt so glad to be back. Isn't that funny? It was just a comfort that they would take care of Peter. While there for tests and x-ray's everything of Peters died, his monitor, he ran out of oxygen, he hadn't eaten for hours because we didn't have his pump, Ben's phone even died. I was having a panic attack holding Peter and trying to keep rousing him to make sure he was breathing while Ben ran around trying to get another tank of oxygen. The other night we spent in the ER was to replace Peter's feeding tube which had clogged. Sleepless nights, but Ben has been a champ and Peter is doing fine. My doctor is a saint. He always brings his laptop to our appointments. You might think that is akin to a kid bringing his cell phone to class, but it's not. He sits and types everything I say and asks questions to fill in the holes in Peter's medical record. He told me that, although it isn't what pays, he likes taking the kids that are complicated, that take more time. (I usually have to have a double appointment.) It is the part about his job that he loves and he was glad that we were referred to him. I told him what a huge relief it was to hear that. He's seen Peter twice this week and called twice personally, and his nurse has called several times as well. Bless them all. Here are the words to that song.

Neville (Colin's Father):
When we left off last night
The hideous dragon
Had carried the maid to his cave by moonlight
He gnashed his teeth, and breathed his fire
The heath quaked, and we trembled in fear.

I said, "Someone must save this sweet raven-haired maiden,
Though surely the cost will be steep."
So we lads all drew lots,
Our insides tied in knots,
And I won, and the rest went to sleep.

So, I picked up my staff,
And I followed the trail Of his smoke
To the mouth of the cave,
And I bid him come out,
Yea, forsooth, I did shout,
Ye fool dragon be gone or behave!

And then under my breath,
I uttered a charm said
To make the worst fiends become kind.
Knaves and knights of dire plights,
Now diminish his sights!
And it worked and the dragon went blind.

And he charged off the cliff
Howling mad and he died,
And the maiden accepted my ring.
And then you came along,
And were brave, bold, and strong,
And in thanks, every night now I sing:

Race you to the top of the morning!
Come, sit on my shoulders and ride!
Run and hide, I'll come and find you,
Climb hills to remind you,
I love you, my boy at my side!

Now, another foul dragon's appeared,
I must leave you.
He's scorching our land with his breath.
From his lair this one taunts me,
He dares me, he haunts me.
Once again, we must fight to the death!

Would to God I could stay and instead slay your dragon,
This beast who sits hunched on your back.
Would God I could wrench him away from your bed,
Or cut off or tear off his terrible head,
Could breathe out my fire on him
'Till he was dead,
Or beg him to spare you and take me instead!

As it is I must leave you in care of my brother,
The wizard, who lives on the hill,
Who has promised his art,
Will soon pierce through the heart
Of this dragon that's keeping you ill.

And I know that your mother, God bless her,
Would want you to do as he says and grow strong.
And you know that as soon as I can I'll return,
So be brave, son and know that I long
To race you to the top of the morning!
Come, sit on my shoulders and ride.
Run and hide, I'll come and find you,
Climb hills to remind you
I love you!
I love you, my boy at my side!

Well, we finally made it home. It's been crazy, but I think we are maybe getting a hold on things. He is a sweet little boy, and I think it appropriate that he came home on this particular weekend. Maybe just a little gift from my mommy, she died two years ago today. I miss her so much. I know she would want to be here, but as my five year old neice Lainey said to me last week, she is, we just can't see her.

"I've had some time to think about you
And watch the sun sink like a stone
I've had some time to think about you
On the long ride home."
- Patty Griffin

roomies

Big news - Ben and I will be "rooming in" at the hospital one night this week to learn how to use all of Peter's new coming home equipment and make sure we are comfortable doing everything sans nurses...and then? (cross our fingers) We get to bring him home. The NJ-tube is in place, so it goes in his nose, down his throat past his stomach, and into his small intestines. His feeding pump will be going pretty much continuously since the intestines can't hold too much at once. We know CPR (the modified "Peter" version since there is no sternum to push on in Peter's case), we've got the car seat, everything is ready at home, my awesome ward even cleaned my house, we are set! I can't believe it. It feels so dreamy. Hopefully this isn't another false alarm, you'll think I was the girl who cried wolf!

Sorry it's been awhile, I just didn't have much to say. Tomorrow, we will meet with the surgeon who did Peter's last surgery and would perform his g-tube surgery. It sounds like she is not wanting to do it yet. She will have to open his original incision and move his stomach around in his abdominal cavity to place the tube, and she feels that he might not be far enough from his previous surgery to do such a thing. She could do it, but it's still pretty cramped in there and it might make his feeding problems worse. She is thinking that he should wait a month or so until he is bigger, meanwhile going home on an NJ tube, a tube in his nose that goes past his stomach and into his small intestines. His feeding would be running continuously to allow digestion and hopefully he would reflux less and have less oral aversion after a while. Then when she performs the g-tube surgery she would want to do it with a Nissen. They would wrap part of his stomach around his esophagus and stitch it to help him keep his food in his stomach, to help the sphincter do its job. I was hoping he wouldn't need this because it is a permanent fix, and he wouldn't be able to throw up ever again, even if he needed to. Anyway, we'll see. If this is the case, we might go home sooner and then come back into a different unit later for recovery after surgery. Here are some pics and vids of the last few weeks.