Brianna's Surgery

We went to the hospital on Friday morning for Brianna's surgery. Thankfully, Brant's parents were able to fly out on Thursday to give us a hand, staying with Garin and shuffling back and forth to the hospital because Brant had to work 12 hour shifts on Saturday and Sunday.

Her surgery was scheduled for 10:30, and we had to check in at 9:15. I was last able to nurse her around 5:45am. Of course, did we actually get in on time? Of course not. We were the 3rd surgery of the morning by that surgeon, and of course the first went long. The boy before Brianna was called in around 11am, so we finally went back around 12 to the OR, and they put her under the gas while in my arms around 1pm. She did remarkably well, considering that she had last eaten at 8 the night before and nursed at 5:45 in the morning, so it had been over 7 hours since she'd had anything to eat or drink. She only started getting really upset around 12:30. Such a trooper!

Her surgery took just under 2 hours. Everything went REALLY well, and she had no complications. We went in to the recovery room around 3:30. She was mostly sleeping off the anesthesia, coming in and out every ten minutes or so with weak cries. After about an hour in recovery, she moved up to the pediatric ward. The first evening/night went well. She was able to be soothed pretty easily with a pacifier, dipped in sugar water. She wasn't able to eat or drink anything while her stomach recovered, but she was still pretty out of it from the anesthesia and the morphine.

The next day she started to become more of herself, and switched to a less powerful pain killer. We were able to start tube feedings and breastfeeding that afternoon, and were told that as long as she tolerated the feedings well, she'd be released the next day. We were able to take a long walk around the hospital, enjoying the beautiful view from Tripler out onto the western part of the island, overlooking pearl harbor and the ocean, enjoying the refreshing evening breezes.

That evening wasn't so pleasant. She no longer was interested in the paci and wanted to nurse, which we did. However, with the continuous tube feed going, her tummy got a little too full after she was woken up by a blood pressure check at midnight. She was extremely agitated, crying a lot, and difficult to soothe. And of course, being a hospital, there was no real comfortable place to nurse or hold her, no rocking chairs. Very frustrating - you think a pediatric ward would have a few rocking chairs...something I might think about donating to them in the near future. After using the tube to release some of the contents of her tummy, she settled down and went to sleep (by now, it was about 3 am). She woke up at 7, nursed, and fell back asleep watching sesame street, doing the same thing an hour later to a different PBS show. They told us that she would be released. We took a few more walks while waiting for the paperwork and finally left the hospital at about 1:45 pm, got home and watched the superbowl with grandma and grandpa.

She's recovering very well and seems to be almost back to her old self. She's a bit worn-out and not really interested in her baby food like she was, but otherwise in good spirits. Right now she's sitting on the couch with grandma, grandpa, and daddy, babbling softly.

Here are some pictures of her tube and the incisions where they put the scopes through (for the tube and the fundoplication).

The Feeding Tube...

So we met with the surgeon today and Brianna is FINALLY scheduled to get her feeding tube. February 5th is the big day. At the same time they will do a Nissen Fundoplication - where they wrap part of the stomach around the esophagus to help control her GERD.

It's scary, but we're ready for this. Brianna has gained less than four pounds in a year. It's been a frustrating process getting the medical professionals to figure out what needs to be done. I'm ready for the experience of nursing her and having her learn to eat solids to not be filled with the constant pressure to shove calories into her. Now the feeding tube can take care of the heavy work at night, and during the day she can enjoy nursing and eating yummy food (hopefully moving away from purees totally in the next six months).

So here's my little girl. Two weeks before her surgery. =)

The Trouble with Sleep

I'm chronically sleep deprived. Honestly, I don't think I've gotten more than 4 hours of sleep in a row in a year and a half. Maybe one fluke night of six hours.

You see, Brianna doesn't sleep. At least, that's how it feels sometimes. She definately does NOT go to sleep before 10pm. And then, if it's a good night, she'll wake up once or twice before seven. But Garin is awake at 6am on the DOT.

Bad nights. Well. I'd like to say they're few and far between. But they come and go every few days. We had TWO WEEKS where she didn't sleep for longer than an hour, and it took at least an hour to get her back to sleep.

We're testing and trying all sorts of different things. Sometimes they work, sometimes they don't. The weighted blanket seems to be helping a bit. She doesn't seem to need to be totally passed out any more when we lay her down, as long as we cover her with the weighted blanket. And it does seem to be helping her sleep longer - as long as her "other" issues aren't bothering her that night.

The problem is there are several things affecting her sleep, and it's hard "treating" them all at once. There's the sensory processing disorder issues (for which we got the weighted blanket). There's the reflux (sometimes the medicine helps, sometimes it doesn't) and I got a wedge to help elevate her, but it's not very soft, and she likes soft (see the sensory issues). And then there are nights when she has horrible gas, and she can't stop moving. This seems to be helped as long as we make sure she gets enough Mirolax earlier in the day. But sometimes not. And sometimes it's like her little brain just doesn't want to shut down. So another question to bring to the neurologist is the possibility that maybe she has some seizures going on. So I'm going to ask about an overnight EEG. We'll see how long they will deflect me on doing that. Although the neurologist seems to be quicker about testing for things than her other doctors.

We're FINALLY getting back in tomorrow with the ped GI doctor about getting her a scope and/or a barium study done. I'm hoping that will let us know what's really going on inside of her.

She's such a happy sweet girl during the day. People have such a hard time believing that she ever gives us a hard time. I tell them to swing by around midnight or nap time.

But here are some pictures of my sweet babies!





Garin built this all by himself, can you believe it? ;)




She's just so stinkin' cute!!




Garin went down to the mailbox with the keys and got the mail ALL BY HIMSELF! What a big boy!

FLYLADY!

Well, I'm starting the flylady program. Today is clean my sink day. My house isn't totally out of control, but I feel like I'm starting from scratch every day. I've heard about fly lady for so long, and I think today is the day to do it!

I've been feeling like a zombie a lot lately. B is working midshifts, and both of the kiddies have been waking up at night a lot lately. Garin seems to be moving out of it, but with Brianna, you never know if it's going to be a good night or not. They're both teething, but fortunately, this is it for Garin, the last two are just about there.

But Brianna always seems to be struggling with teething, her reflux, a cold, or some combination of all three. Some nights she'll be up every hour and takes 30 minutes or more to fall asleep! She had three good nights recently (of course Brant was off work, she must have a sixth sense). Last night was OK (Brant was working), she slept a good 4 hours, but after 2:30 she had a hard time falling back to sleep. Finally was good around 3:45, but Garin woke up at 5 and came into bed, then she was up at 5:30 and well, we're all up now.

So, I think I'm going to jump in the shower and go shine my sink! We'll see how this fly lady thing goes! Garin has his art class at Gymboree this morning, I'm going to try to take my camera and get a couple cute pictures.

Moving In!!!

So, what a crazy month it's been. We moved into our house on the 30th of July. Wow. It was definately an adjustment. We've downsized from a 1900 sf house with a 2 car garage and attic, to a 1200 sf house with a carport and a small storage room. Hmmm. And we have this little problem called "we never get rid of ANYTHING". So we're trying to cure ourselves.

Meanwhile, our household goods arrived on the 14th and our house has virtually exploded its contents out into the carport and beyond. We're slowly sorting our way through things. A HUGE pile is being donated to Heather to have a garage sale to raise money to take things to the orphanage in Ethopia where they are adopting their daughter (who is only 2 weeks older than Brianna!). The pile is expanding by the day as we slowly make our way through the boxes - no easy feat with an active 2 year old and an almost 1 year old that needs almost constant attention. It's exhausting.

We hope to have sorted through everything and gotten our house in livable order by the end of next week. B had last week off, but he's back to work today. The bright side is that he doesn't work days, and really only works about half the month, so he's around during the day to help, and has a lot of time off!

So here are some pictures of our exploding house:

This is the outside last weekend - we couldn't fit everything INSIDE the house, so we had to fill the carport. The delightfully ugly furniture is the "loaner" furniture we used for three weeks while we waited for our household goods to arrive.

B taking a break from the hard work - this is the backside of the family room, we're making it into a playroom for the kids and my desk will be in the corner

The family room, with the gargantuan television that is about half the size of the room - but B refuses to get rid of it. Don't worry, some of that furniture will go in storage...eventually...

The laundry room - it's a little more organized now, but has three piles of boxes stacked about 7 high filled with books. I have a book collecting problem.

The kids room - the first one that I unpacked all of the boxes, for fear that Garin would try climbing and be buried in them. We still haven't put up the crib yet, that'll probably be the last thing we do:

Our room, which is a daily project. We just have so much stuff. I'm trying to get rid of a lot of our clothing.

This is our problem room. It's the guest room. Well, it's SUPPOSED to be the guest room. The idea was that I'd put both of the children in one room so we'd have an extra room to put guests, and we could put one of our desks with the computer. Well, B gets this idea that it's HIS room. I'm working on getting that idea out of his head, because for three years in GA he had "his" room that was filled with "his" stuff that never really got put away. It was a nightmare. So I refuse to have that problem here. Meanwhile...where do we put "his" stuff (his stuff is all of his "gear". I'm not really sure what that means, but I think it's something to do with a nuclear holocaust and having all the equipment to meet up with the other survivors to start the new society. Or something. It's probably really just a lot of paintball equipment and the surround sound for his computer gaming system).

The one room that is finished - the kitchen. Thank you Heather. It really is vital that the kitchen get set up and ready to go right away. I'm at peace here. The drawers may only be nine inches wide and the counters are made for someone in a wheelchair, but at least everything is put away.

I've learned many lessons from this move. Most importantly - get rid of stuff BEFORE you move, not after.

Baby Food

Well, we've entered the world of baby food. Since the only thing Brianna can eat is pureed foods, I decided to try to avoid jarred food as much as possible (because, really, have you TASTED that stuff?)

So here are some of our ventures:

Sweet Peas:


The stash (sweet potatoes, butternut squash, acorn squash, sweet peas, pears, apples, butternut squash stew):

Mommy and Brie in the kitchen:

My failed attempt at making the asparagus risotto - undercooked the rice, ugh

the butternut squash stew: butternut squash, apples, potatoes in a homemade vegetable stock

Crazy Life

It's been such a whirlwind. I moved us out of our apartment the first week of June, and flew out to California to meet B when he finished up his outprocessing in Georgia. Two weeks in Cali and he was finallly back with us! We spent another two weeks between there and Nevada and then we were finally heading back to Hawaii.

We're currently staying at the Navy Lodge on Ford Island (part of Pearl Harbor Naval Base) waiting for our home to open up on Hickam AFB. We'll be moving into our house on THIS FRIDAY - YAY!!!!!

Meanwhile, we're getting back in the hang of family life. We took advantage last Sunday to go out and drive out to the northwestern part of the island. We found a neat area that didn't seem to get much traffic and showed Garin the tide pools - it was a good time.

Checking out the fish and crabs in the tidepool:

Cool tide pool:

We're also back in our crazy appointment cycle. Brianna met with the pediatric neurologist and the feeding time. The neurologist checked her kidney function (okay) and had them take blood to send off for genetic testing. It'll take a few weeks to get the results back from that. They sent some off for chromosonal testing, and others off for other genetic testing - there are hundreds of different possibilities there. If those show anything abnormal then B and I will get testing to compare the results. Yipee.

The feeding team was interesting. It includes the pediatric neurologist, a child psychologist, the nurse for the GI doctor, the speech pathologist and a nutritionist. Dr. Pederson (the neurologist) suggested that she may have GERD (reflux) and put in a prescription for that - we start her on that today. Hopefully this will help her gain weight. She doesn't spit up a lot, but has other flags for reflux, and it's possible that once the reflux kicks in, she stops eating and just snacks all day and never quite gets the calories she needs. Which is possibly why at 10 1/2 months she's only 13 pounds.

The speech pathologist also told me that her muscle tone weakness also seems to extend to the muscles in her mouth and esophogus, so we're going to continue to stick with the baby food. It takes her a while to eat it, since she doesn't really use her tongue and swallowing muscles ver well.

The nutritionist also instructed me to feed her solids more often (she can only handle baby food at this point) - about every 2-3 hours, since she can only eat about 2 ounces at a time. The child psychologist wanted me to "replace" two of the times I nurse with feeding her baby food. I had to bite my tongue, because that made no sense to me at all. Her reasoning was that for her psycho-social development she needs to focus on eating solids and less on breastfeeding. Which I could maybe get if she was over a year and we wanted to focus on her feeding herself, but to me, I don't quite get how spooning baby food into her mouth over nursing her will help her psycho-social development. But whatever.

I AM however adding some powdered formula to her jarred baby food (at the suggestion of the nutritionist) to bulk up the calories, which makes sense to me (breastmilk would thin it out and kill the consistency). Once I able to make my own babyfood again I'll use breastmilk when I can since it has more calories and better nutritional value than formula, but for now this method makes sense.

I'm giving her baby food about 4-5 times a day right now, she's totally not interested first thing in the morning, but it seems that as the day goes on, the more she likes to eat - and she DOES enjoy it, lurching towards the spoon with open mouth. But she can only do so much before she starts to cough and sputter, and then I "top her off" by nursing her. I nurse her whenever she wants, because she can certainly use it, and she needs it.

But she is doing so much better. My next post will be highlighting all about the things I have to be thankful for, because she IS improving and it's not all gloom and doom. =)

Garin had his speech evaluation two weeks ago. No surprises there. His ability to understand language and follow directions is right on target, but everyone else's ability to understand what HE'S saying, well, not so great. He has a difficult time translating what he hears into proper pronunciation, so he has some speech idiosyncracies (his hearing is fine, however). His vocabulary is great, and he speaks short phrases, he's just ridiculously difficult to understand. He mis-matches a lot of his consonants (he replaces many sounds with f-, g-, k- sounds). But he's getting speech therapy, and the speech pathologist was confident that with some work, he'll be right on track, so that's good!!

So that's it for now. I plan on posting in the next couple days with LOTS of pictures showing how great Brianna is doing!!

God bless!!