Sunday, May 31, 2009

A day in the life of Lexi Lou Who

Alexis is up to 40ml by bottle or breastfeeding 6 times a day with the continuous feed still just at night. She continues to nurse pretty well, continues to keep her food down, and is getting more alert and showing more personality every day. The way the feedings are timed, she's getting on a schedule which helps me to get on a schedule--something I haven't been on since preschool got out. The nurses feed her a bottle for her 6a.m. and 9a.m. feedings and I get to the hospital in time to nurse Lexi at noon. I nurse her again at 3 and 6 and often head home then. If the boys aren't home or if they're having an early bedtime for any reason, I'll stay at the hospital to feed her at 9 p.m. before going home. Alexis usually falls asleep around 11 p.m. and sleeps well throughout the night. Yeah! Hope that continues once she's home. The nurses have also said she's still really groggy for the morning feedings. She appears to be a night owl and NOT a morning person--just like her mommy. Fine by me. (I do realize the reason she sleeps well at night now is because she's on a continuous feeding at night which she obviously won't be when she's home--unless I can rig up a funnel and some straws.)

Wednesday, May 27, 2009

Yes, It's a sickness I can't control

The minivan is still getting me to and from the hospital. Since filling the gas tank this morning (can't be too careful since the gas gauge doesn't work) I have to drive with the gas lid flipped open, but no biggie. They changed Lexi's feeding plan today. She was increased to 6 by mouth feedings. Instead of spacing them out over 24 hours, we are doing the feedings every 3 hours during the day. 6a, 9a, 12p, 3p, 6p, and 9p. The feedings are either bottle (now at 30mL) or breast and she doesn't receive her tube feeding at this time. After her 9 p.m. feeding they turn on the continuous feed and she receives that all night. Dr. P. also decided that instead of increasing the number of by mouth feedings, we'll leave it at 6 for now and instead increase the volume. On Friday she'll receive 35mL. I think it'll still go up to 55mL eventually, but I think that also depends on her weight. As the volume of the by mouth feeds increases, the quantity of the continuous feed will decrease until it's no longer needed (YEAH! But refusing to get my hopes up!) They'll then have to also add some bottle/breast feedings at night. Once they get her where the want her, she'll have a few days to just be monitored, and then... well, let's not get ahead of ourselves. She's still weighing in at 6 lbs 11 oz. Found out I'm not the only one obsessed with Jon and Kate. The nurses and doctors are pretty hard core too. Nurse D. actually brought me in an US magazine to read and I've had discussions about the show with Dr. A. and Dr. P. this week. Everyone seems to agree: Team Jon.

Tuesday, May 26, 2009

Day 50

Alexis now receives 5 bottles a day in addition to her continuous feed through the tube feeding. If she continues to tolerate the feedings well, she’ll be up to 6 bottles tomorrow and then two days later be up to 7 bottles and then 8. Once she receives 8 bottles a day they will then start increasing the volume. Right now the bottles contain 25mL. It would then increase to 30 and then 35 all the way up to 55mL. After that, I don’t know.

Jason continues to run daddy day care while I’m at the hospital. Mom has been allowed some time off to be in Elkhart and Paula’s busy preparing her pool for me—I mean my boys—I mean—oh, never mind.

The Durango is at the shop for something regarding the seats. Not sure what--I don’t even ask. So I’m driving the lovely mini van. I won’t call it by its real name. There are good Christian people who read this blog. For those of you who haven’t had the pleasure, it’s a lovely chipped gray, covered in rust. Or as Jason calls it, patina. But before I drove off this morning I was given explicit instructions: Don’t open the rear left window, and the gas gauge doesn’t work, so watch your mileage. Hopefully the cracked front window won’t be an issue. I’m a bit skittish since the time I was driving and the whole back window fell out, smashing to pieces on the 465 exit ramp. I’m happy to report I made it to and from the hospital safely. I didn’t even have to flick the turn signal back and forth to make it work. I get my Durango back Friday. Sigh.

The Cyclist, the Pirate, and a cute chunky monkey

Saturday I was at the hospital by 8 a.m. and stayed with Alexis for 3 hours. Headed home, packed up the family and was in Elkhart by 4 p.m. for the nieces birthday party. Spent the night at the folks house and left Elkhart on Sunday around 2:30 p.m. Got home by 5 and made it back to the hospital by 6. Phew.

Nicholas is getting so big. It seems like overnight he has learned to ride a bike without training wheels. He's becoming so independent. And today he showed me that he has another loose tooth. STOP GROWING UP!!! And Blake just continues to make me laugh. He has very little interest in riding a bike. He just wants to be a pirate. A direct quote: "My name's not Blake. It's Captain Hook."

As for Alexis, our little chunky monkey is up to 6 lbs, 11 oz. She now receives 5 bottles a day and is also on a continuous feed. She's really starting to show more of her personality and the nurses love her. We had another nurse request to be her associate--this nurse on the night shift, which makes me happy. Another nurse came to tell me that Alexis and another set of babies near her are considered the "good assignment up front" by many nurses on the unit. I love that.

Saturday, May 23, 2009

A Wireless Moment

I had to snap pictures fast today while we had a couple tube-free moments (or as my Dad would say, "she's gone wireless!"). The goofy grin leads me to believe she enjoyed her moment of freedom.

Yesterday's x-ray looked great and she was therefore increased to 3 bottle or breast feeds a day and her continuous tube feed is up to 20mL. She's had a couple little spit up episodes, but nothing significant or concerning. She is still at 6 lbs, 9 oz.

Saturday I'll be in Kokomo for my nephew's birthday party. I'll probably leave early to head back to the hospital Saturday evening. Sunday I'll hit the hospital early in the morning because we have to be in Elkhart by 4 for my nieces' birthday party. I'll leave the boys in Elkhart with the folks and will drive home Monday so I can be at the hospital Monday evening. As I write this, I know it sounds rediculous. I am probably at that hospital more than any other parent. I'm lucky to have the luxury of family help and a short drive and I'm not currently working, making my daily visits possible. I know that Alexis would be fine if I didn't go to the hospital for one day, but I can't do it. If for some reason I physically was unable to go, then fine. I wouldn't like it, but fine. But if I can go every day, then I'm going to go every day. I can't bring myself to not be there. I drive myself nuts with the question of, "should I be spending more time with the boys?" and maybe I should. But I need to be with Alexis, too. I rationalize it to myself by knowing that Nicholas and Blake are still, most days anyway, still seeing me as much as they would if I were working a full time job. I guess right now Alexis is my full time job. Can't wait until our nursery becomes my home office...

Friday, May 22, 2009

A few pics...

Nicholas learned how to ride a bike without training wheels over the weekend. He's getting to be quite independent...

Jason and I took the boys to Bounce Planet just for fun. Blake was in heaven when he saw the HUGE inflatable pirate ship...

I'm now so used to Lexi having a tube and tape on her face, the few moments I see her without them (when they have to change the tube every three days), she almost looks strange...

Lexi's little leg in Uncle Brent's hands...
My precious babe...

Wednesday, May 20, 2009

My Little Porker

Since I see Alexis every day, I don't notice big changes in her unless I look back at old pictures. She's been hovering right around the 6 lb, 6 oz mark for a while, so they started adding formula to her breast milk for increased calories. Nurse J. walked in today after having been gone for a week and said, "Oh my gosh! She got fat!" The little moose shot up to 6 lbs, 9 oz almost overnight.

Dr. P. has ordered an x-ray for tomorrow morning just to see how things are looking and after that he will consult with the pediatric surgeons to see about increasing her feedings a bit more. Makes me nervous, but so ready to see some improvements and get my baby home!

I did have a discussion with Dr. P. yesterday, asking him about after Alexis is home, if she should have the significant vomiting episodes like she did when we had our big set back, at which hospital would she be treated. I know that the NICU we are in now is not an option, because it is only for babies right out of childbirth. He thought Riverview (here in Noblesville) would be able to handle it. Their doctors would contact the pediatric surgeons and hydrate her and restart feedings there, but would send her out to St. Vincent Pediatric Hospital should they feel it was more than they could handle. I wouldn't leave the NICU now to go to another hospital for anything, since it's such a comfort knowing Alexis is in such good hands. But oh, how nice it would be to drive 15 minutes to the hospital instead of 45.

Tuesday, May 19, 2009

Day 43

Alexis is still doing well. No recent spit up episodes which is great. The doctors didn’t change anything over the weekend. They wanted to make sure they could handle the amounts of milk okay and she has. Today the neonatologist spoke to the pediatric surgeon and increased her feedings again. She’s at 19mL per hour continually through her feeding tube and still at 2 bottles or breast feeds a day, but if she bottle feeds, that amount is now increased to 25mL for each bottle. They’ve also fortified her breast milk by adding formula to increase her calories since she hasn’t put on enough weight. She is still weighing in at 6 lbs 6oz.

I would never be able to be a nurse. Not because of the 12 hour shifts or the emotional turmoil, but they have to do math in their heads. I was never too bad at math in school, but math in my head? Nope. I will say, I’ve learned quite a bit in terms of mathematical equivalents. 30mL equals one ounce. 1mL is the same as 1 gram. Maybe by knowing this, it will help with my culinary skills. If I cook for a smurf. (Vanity Smurf was always my favorite—wonder what that says about me?)

But my gripe du jour: military time. All the clocks on the NICU are in military time. Yes, thank you, I realize you just subtract 12. I get that. So why do I have so much trouble with 2100? I have to count on my finger, double check, look at my watch to make sure. Ridiculous. And by the way, saying “twenty hundred” just sounds stupid.

Time to get back to my People magazine—obsessed with the Jon and Kate drama. I spend a lot of time debating and discussing the latest rumors with the NICU nurses who have been passing around my People magazine with Kate on the cover. It’s just a matter of time before we see team Jon and team Kate t-shirts around. Not that anyone in their right mind would be on team Kate…

Friday, May 15, 2009

Cover yourself, for cryin' out loud.

Even though the NICU has 4 lactation rooms, the nice thing about Alexis having a private room is that I don’t have to use the lactation rooms. Instead, I shut the door, turn the recliner around to face away from the door and out our 3rd floor window, and pump away. It seemed like a foolproof plan until today when I was facing out the window, pumping up the party, and all of a sudden, there was a window washer staring right in at me while I sat a couple feet in front of him pumping away. Lovely.

When I left the NICU last night at 1 a.m., Alexis had stopped throwing up. She was puke-free all day today, a bit more alert, enjoyed her visits with Daddy and Aunt Paula, and was doing fine. I spoke to the neonatologist who said we would just keep her at the same amount of feedings all weekend (18mL per hour plus 2-20mL bottle feedings) and hopefully if all goes well, we’ll start trying bolus feedings on Monday. The neonatologist also discontinued her nasal canula and her oxygen levels remain good. And her IV is out. Yeah!

Tonight, about the same time that she started vomiting last night, she starting puking again. She’s had about 3 good up-chucks (how many different words can we come up with that mean “vomit”?) and fell sound asleep. Exactly like last night. Same time, same amount, same cause? Both nights the nurses checked the residual in her stomach and there was lots of air in there which may have been the problem. I have to remind myself that even with all the spit up, she still has had a lot less than either boy ever had. Nicholas spit-up for the first 8 months of his life, every single feeding. Blake—same thing but for his first 11 months. Compared to them, Alexis has had next to nothing.

My gripe du jour:

Wednesday, May 13, 2009

Maybe knocking on laminate will suffice

I got back from having dinner with Jason and found Alexis sleeping in her own vomit. Lovely. I was cleaning her up when the nurse walked in. I hadn’t met this nurse before. I cleaned up Lexi and then she threw up again. Cleaned her up and—need I say it? Threw up again. Crap. The nurse taking care of the baby next door happened to walk in and I was glad to see it was the same nurse we had last week when Alexis had all the vomiting happen. So this nurse explained to Lexi’s nurse the events of last week. I was glad to see that this time (all you weak stomached people: skip this part and proceed to the next paragraph) this time the vomit was yellow, not the lovely bile and dried blood vomit of last time. But the nurse from last week said that this was how it started last time and then it changed to the nasty dark greenish brown. Crap.

It has been over an hour since her last vomiting episode, so I’m really hoping that maybe she’s done. I don’t know if she ever went this long last time or not. She has a little tiny splatter of puke on her shirt, but I’m not about to change her and test Murphy. Never considered myself a superstitious person, but I’m looking for some wood to knock on…

Tuesday, May 12, 2009

IV # IV (that would be IV number 4)

And the IV is out again. So they stuck a new IV in her hand. At least this time, it wasn't Lexi's doing. The IV just went bad. It happens. If it could have just waited and gone bad on Tuesday, they wouldn't have had to put a new one in, but no. Had to go bad a day early. And it's so hard to find a vein on this poor child, they had to call in the queen bee of IVs. (I think the other nurses have IV NV (envy--ha!) ) And bless queen bee's heart--she got a vein first try and Alexis slept through the whole thing. Add queen bee to my rapidly growing list of doctor/nurse heroes.

Alexis got to have her first bottles today. Or, maybe I should call it the first bottles, round two. Lexi can now nurse or bottle feed (only 20 mL) twice a day. No problems there (that I've heard of anyway). I also asked the neonatologist about weaning Lexi from the nasal canula since her oxygen stats have looked pretty good to me lately (as if I'm a nurse and have any idea what I'm even talking about) and the doctor agreed to decrease the nasal canula to a 1/4 L of flow and if everything looks good for the next 2 days, she will try to d/c it. Let's hope. Maybe in 2 days we'll no longer have oxygen OR an IV. Ahhhh, the freedom!

Sunday, May 10, 2009

Happy Mother's Day!

Alexis continues to do well with her feedings. She's up to 9mL per hour with no emesis. Tomorrow she'll start feedings by mouth again. We'll also have a new neonatologist. Little miss muscle tone did manage to pull her tube feeding out of her nose, so they had to put a new one in. Little stinker. At least the IV in her scalp is still in. For now.

Saturday, May 9, 2009

Here we go again...

Yesterday Alexis was started back on continuous feeds. She gets a very minimal amount--only 3mL an hour. Today they upped it to 6mL per hour. Assuming everything continues to stay down, they'll continue to keep increasing the feeding by 3mL until she reaches the max which I believe is 18mL an hour. When she hits the max, they can stop the IV fluids. At 12mL per hour they'll add bottle/breast feeding twice a day.

Dr. B (the pediatric surgeon) stopped by to explain to me what had happened. Right now, as is common with babies who have had surgery for duodenal atresia, the duodenum is still too big and the downward valve is too small. It's like a funnel that's filled too quickly. Put too much liquid in too fast and it overflows. That's what was happening when Alexis started vomiting. Too much volume of feedings too quick. The only thing that makes it better is time, so they'll be more gradual this time with her feedings. Dr. P estimated another 3-4 weeks in the NICU. Crud.

Yesterday the occupational therapist stopped by to tell me she had seen Alexis earlier in the day. She said, "Alexis forgot to read the manual!" Huh? "Alexis didn't read the manual to learn that she is supposed to have low muscle tone." That's my girl. Too strong for her own good. I'm glad she didn't read that stupid manual! There's something to be said for illiteracy.

Unfortunately, along with Alexis's strength comes the ability to pull out her IV. It started in her hand. She pulled that one out 2 days ago. So they put an IV in her foot. She kicked that one out last night. Now the poor thing has an IV in her head. Not pretty to see. Maybe I'll put a bow on the IV to disguise it.

(Happy Birthday, Paula!!)

Thursday, May 7, 2009

Happy Birthday Alexis!!! (one month old!)

Alexis seemed to be feeling better today. Alert, content, but quite crabby at times. I'm sure she's hungry. Poor kiddo. Fluids just don't cut it. But if she thinks breast milk tastes good, just wait until she experiences her very first milk duds!!!

The only change today is that her repogle was turned from suction to gravity. Sometimes when they do this it can cause more vomiting, but she hasn't vomitted at all since yesterday. If she stays stable, they'll put her back on continuous feeds tomorrow.

And my gripe du jour: nipple pain. I won't go into detail, but trust me on this one.

You can call me Honey.

Dr. P called me this morning at 8:30. Last night Alexis started throwing up. They stopped the bolus feeds and returned her to continuous feeds, did an x-ray and some blood work. Dr. P said that when Alexis wasn't throwing up she seemed confortable, which is always a relief to hear.

When I showed up at the hospital at 10 a.m., I panicked. No, not because of Alexis. Nurse Nut-job was standing at our doorway. Imagine my relief when I saw Nurse D (our primary) coming toward me and realized she was our nurse today. Whew. Anyhoo, by the time I arrived at the hospital they had stopped Alexis's feedings altogether since she was continuing to vomit. They had also put an IV in her left hand to give her fluids. She had no temperature, the blood work came back showing no signs of infection, and she still seemed okay when not vomiting. She may have gotten some sort of virus, or maybe her body couldn't quite handle the amount of feedings she was getting. The doctors aren't sure.

Dr. P took me back to the room where all the doctor's access computers, films, etc. to show me Lexi's x-rays in an attempt to explain how her intestines were dilated (still not sure the point of it, but it was interesting to see anyway) and it was funny being in that room that I was obviously not supposed to be in. First, he announced to the other doctors in the room, "I'm bringing Mrs. Smith in here!" (more on that later) and then when we're in the room looking at the x-rays, I notice a sign on the wall that says, "I see stupid people." I kept my laughter to myself.

I got to witness Alexis throwing up multiple times in the morning and afternoon. Not pleasant. I won't gross you out with the details, but I will say that this girl can aim and fire! Poor Nurse D got hit, I just got a little splatter, but poor Alexis has been soaked, changed, and washed up so many times today, I feel bad for my mom who I'm putting on laundry duty (oh wait, that's right. She's already ON laundry duty. Good ole mom.)

Since Alexis kept throwing everything up, Dr. P contacted the pediatric surgeons and they agreed that she should have a repogle put in. This is the tube that drains all the gunk out of her stomach which she also had for the first week or so after her birth. Nurse D put in the tube and the container filled up almost immediately. Nasty stuff. But thank goodness it kept her from throwing up for the rest of the day. By this evening, Alexis seemed much more alert and content that she had looked all day. The nurse who had her last night when it all started had her again tonight and thought she looked much better. You can tell that Alexis is annoyed by the IV (she's already almost pulled it out) and the repogle tube in her mouth (she keeps licking at it and will occasionally gag). But she obviously feels better. Don't know how long the doctors will wait before letting her resume feedings.

Now, for my newest blog feature--my gripe of the day (or maybe I'll be fancy and call it the "gripe du jour":

Why do people at this hospital insist on calling me Mrs. Smith? Do I look older than them? Do I bake pies? Am I my mother-in-law? NO! Maybe they think they're being respectful, but STOP! Do NOT call my Mrs. Smith, do NOT call me ma'am. Call me Kendra, or miss, or babe, or chick. I will also accept Angelina or Halle (people confuse me with them all the time).

Tuesday, May 5, 2009

4 weeks

Not too much is new. No signs of nurse nut-job lately. Alexis is still doing great. Starting tomorrow her feedings will be condensed to an hour and they will still take place every 3 hours. I can start her feeding hour by nursing and/or a bottle if she's alert. She continues to digest everything really well. The proof is in the pants...

The word "discharge" has come up a few times with the doctors. They still don't want to speculate, but from the bits I've heard, I'd guess maybe, if things continue to go well, maybe another 2 weeks. I refuse to get my hopes up. Neonatologists change each week and they all have different opinions.

I took Nicholas to register for Kindergarten today. How can I have a child old enough for Kindergarten. The day I have to put him on a bus and send him off without me is going to be a bad, bad day--for me I mean...

Saturday, May 2, 2009

Hope you're not one of those "Sorry" people...

Lexi is quite a popular gal here at the Women's hospital! The nurses are able, if they choose, to ask to be a primary nurse for any of the patients. That means that any time that nurse is on the schedule, they are assigned to take care of that particular patient. Nurse B asked to be our primary within our first week of being here. We still don't see her often because most nurses work 3 days a week for 12 hour shifts. If you already have a primary nurse and another nurse requests to have you, they are called associates, and you can have as many associates as you want. D, J, and C are our associate nurses. We also have another primary nurse, D p.m., for the night shift. All these nurses are absolutely wonderful and we're so lucky to have them. Even Jason likes them! I feel totally at ease leaving Lexi here when I know one of them is on the schedule. There are still many days that none of these nurses are on the schedule and we end up with someone else. We've gotten to know MANY nurses already and almost all of them have been fabulous. Almost all of them.

A recent nurse left something to be desired. She was nice and her intentions were good, but PUH-LEEEZE! I don't know if she had to talk me through every single step of what she was doing in an effort to teach me, or if it was her way of reassuring me that she was following all the rules and procedures. She offered to let me bathe Alexis, but I was happy to let her do it (I'll have plenty of time to bathe her when we go home). When I told her she could go ahead and bathe Lexi, she asked me, "you won't be offended?" Huh? Offended? Then as she bathed her, she explained every little step of how she was doing it. "Now, I always use lots of washcloths. You never want to wash her skin and then dip the dirty washcloth in the clean water." Seriously? I get the point, but this is a tiny infant in a very clean environment. How dirty do you think she got? Did she go rolling around in the mud while I was out?

When the boys came to visit (keep in mind, they've been here at least 3 other times) The nurse had to walk us through all the steps. "They need to wash their hands (no kidding!), put on their gowns (no kidding!) and they have 15 minutes (no kidding!). And after signing the form confirming that they are free from colds, flus, rashes, strep, whooping cough, acne, leprocy, etc. (no other nurse has ever made us sign this form--didn't even know this form existed), she then verbally asked me if they were free from all these things and listed about 25 conditions that they couldn't have. I think she might have had a coronary if one of the boys had sneezed during the visit. Thank the Lord she didn't see Blake when he showed off the booger he picked.

At feeding time I was monitored and talked through the process of how to bottle feed Alexis. Is this my first child? Do you think I don't know how to burp her? It would have been a bit patronizing if Alexis had been my first child.

This nurse was also like one of those really annoying people who apologizes for absolutely everything and then when you tell them to stop apologizing they say, "I know--I'm sorry!" Nice people, but so very irritating! When Alexis's pump went off (the pump beeps loudly when the feedings run out), she couldn't come to turn off the pump and make the beeping stop. So she had someone get my attention and said, "Mrs. Smith (DO NOT call me Mrs. Smith. I'm younger than you [or at least I'd like to think I look younger than you] and Mrs. Smith makes pies), I'm so sorry to bother you, I know you're busy, but would you mind (is she ever going to get to the point?) because I can't get away, because I'm feeding this other baby, and I'm almost done (move it along woman--my hair is getting grayer) but could you--would you, turn off the pump, since I'm busy and can't get over there right now but I'll be there just as soon as I'm done feeding this little boy who's a premie from Fort Wayne with blue eyes and an innie belly button, who hasn't yet mastered the art of mixing his own formula?" Okay, so I made up that last part, but oh my goodness! I could have had the pump turned off months ago if you'd just spit it out!

There is hand sanitizer all over this hospital and we were told VERY clearly that we need to be VERY aware and if we should accidently touch our clothes or faces or ANYTHING, we should use more sanitizer. I would watch this nurse sanitize her hands, come over to Alexis to barely touch the feeding tube to see that things were flowing, and sprint back to the sanitizer. Okay, so maybe she didn't sprint, but this woman was beyond OCD. She was CDO (that's OCD in alphabetical order). I'll bet this woman sanitizes her hands every 45 seconds. I'm NOT kidding.

It's great that we can request to have certain nurses, but I wish we could annonymously black list a nurse so we wouldn't have to see her again. She made me a nervous wreck. Luckily, those nurses are few and far between. And even this nut case adored my little Lexi.

We've had quite the steady stream of visitors today as well (still no word if they will stop allowing visitors at the hospital because of the swine flu). Jason arrived around 11 a.m. and then I showed up with Nicholas and Blake and JoJo around 1 p.m. After they left, Jim and Connie arrived for a bit. Then Brent and Elizabeth. Then Jason's uncle and aunt (Tom and Vikki). Alexis is sleeping in her cozy little bouncy seat, no changes with her care. She's eaten well today by bottle (thank goodness nurse nut job told me that the nipple goes in her mouth--she may not have eaten as well had I accidently tried to feed her by ear) and if everything continues to go well, they will probably adjust the bolus feedings tomorrow and the tube feeding will be in a more condensed amount of time. We still have absolutely no indication of how long she will be here.
Uncle Brent came to visit today!

Aunt Elizabeth (or "Aunt Dizzy" as the boys like to say) came to visit also!

Alexis in her bouncy seat from Brent, Elizabeth, Layla, and Marley.

Blake at the zoo a couple of days ago--the walrus seemed quite fascinated by Blake!

Nicholas has taken an interest in photography all of a sudden--this is his self-portrait.
Nurse D gave Lexi her first bow! (You don't wanna know how it's attached.)

Thursday was pretty uneventful. Dr. M made a referral for speech therapy (just to clarify, they aren't teaching Lexi to talk--speech also helps with feeding and swallowing). They did the urine culture and the liver ultrasound, both of which came back negative. This makes the doctor assume that the increased direct biliruben count is due to prolonged use of the TPN and not eating for so long. So Lexi will be started on a medication called Ursodiol to help her jaundice. It usually takes a couple of weeks to work but by next week they should at least see that the numbers are going down (we want it below 2).

Today they started bolus feedings. Instead of Alexis receiving breast milk continuously through a tube, they will have the pump on for 2 hours and off for one. This will help her to feel hunger for the first time which should also improve her feedings by mouth. Every other 2-hour feeding, she will receive a bottle and can take up to 50mL. She took 20 today which the nurses seemed very pleased with. And it all stayed down. I'm just so shocked that she so rarely spits up! After Nicholas spitting up EVERYTHING for the first 8 months of his life and then Blake doing the same for his first 11 months, I expect Alexis, especially with her duodenal atresia, to have everything come up. But so far I've only seen her spit up twice and very small amounts. Maybe there's hope that when she comes home, the house won't start smelling like spoiled milk from large amounts of spit up!

Today I met with an OT who had lots of suggestions such as how to hold her, equipment to not use (no Johnny Jumpers!), doing tummy time, and first steps info. Speech Therapy did an eval and I was quite surprised to see that the ST was someone I had worked with 10 years ago at Manor Care! Health care is a very small world! ST watched my feed Alexis and asked a lot of questions about her feeding issues (energy), my breast feeding plans (hate it but will stick with it for now), etc.
I got quite excited to take Lexi off of the nasal canula today. One less tube! Unfortunately her O2 dropped and they put it back on an hour later.

Brent and Elizabeth came to town today for tomorrow's Mini Marathon and got to come to the hospital and visit with Alexis for the first time. She was held by both of them and slept through the whole thing. I think she's quite comfortable with them...

I find it very interesting that they have limited visitors at 3 Clarian Hospitals due to swine flu. I believe that only parents and significant others can visit at those hospital and after hearing this, won't be surprised if St. Vincent will do the same. I think we'll take the boys to the hospital tomorrow for a visit in case they start limiting the visitation soon.