Thursday, January 29, 2009

Therapy consult

Rhys was very grumpy all day today. Poor guy, he wasn't feeling so great even though he wasn't running a fever. He slept okay last night, in between him trashing about from his tummy gurgling, and then he didn't want to get up this morning and slept until we had to eat and leave for his physical therapy consult. He still isn't eating well at all, but I am giving him the benefit of the doubt today since he got his vaccines yesterday.

The doctor called this morning and said they got the results back from his swallow study/upper GI and there is no sign of reflux or aspiration, which is good news, but she thinks he still has reflux based on his behavior. She wants to repeat the swallow study in 4-6 weeks if Rhys hasn't improved with his ability to suck. Personally, I think that is the least of our worries. I can give him an extra 5-10 minutes to finish a bottle if he is an inefficient eater, but the issue is getting him to let you put he bottle in his mouth to begin with. It isn't that he CAN'T do it, it is that he doesn't want to and fights you every step of the way. Also I was thinking about the potential for the alternative methods she mentioned yesterday, specifically the feeding tube, and while this will take care of his unwillingness to eat the proper volume, it does nothing to solve the tummy issue that continues, which is a huge part of why he doesn't want to eat. Two doctors yesterday referred to the tummy problems as colic when I described them, but is colic supposed to last for hours on end? I thought that was a few hours a day and then goes away. Rhys has it pretty much 24/7. He sleeps fairly well and seems to have adjusted to having these sensations, but he still squirms and makes noises all night when his tummy acts up. He would get much more restful sleep if we could just figure out what the deal is!

Our physical therapy appointment today was okay I guess. I didn't really have expectations of the facility since I'd never been to one before, but the whole time I was there I was looking at every thing as though it were infested with germs. The equipment/toys they use for the kids obviously gets handled by all the patients so I asked to make sure everything was disinfected. While I am sure they almost have to do this, do they do it to the degree I would do it? I am fairly certain the answer is no. The whole while Rhys was lying on the play mat I kept thinking to myself I hope THAT part he is sucking on was cleaned thoroughly. I think the therapist was good, but I don't know that any of them get the preemie thing to the degree I would like them to. No doubt she gets what he should be doing and what he needs work on, but do they appreciate that germs are a huge deal and I need you to wash and Purell your hands many times before you touch him?? After she grabbed her pen to scribble notes and then touched Rhys I must have had a crazy look on my face. I think I am psycho. She also mentioned mom groups in my neighborhood I should look in to. Where you can just "let all the kids play together and the moms get a break". In what preemie world does that happen? Rhys hasn't even met his cousins yet and I KNOW where they've been. So anyway, I am wondering if I need to find a different place that really specializes in preemies. For my own sanity I don't think I can bring Rhys for weekly visits the whole while I am scanning the room wondering if the cloth items have been washed between kids and all the play mats and plastic toys have been swabbed down with Clorox.

She said Rhys was doing well, though he does have a few things he needs to work on. We need to get the head to lift higher when he's on his tummy, which is working on the muscles below his chin (I think) and also work on him "slumping" over while sitting so he sort of stretches the back muscles since he always wants to arch backwards. At this point he isn't behind on anything, but then again we're only taking about being adjusted age of about 2 months 3 weeks. This is primarily to get some instruction on how to interact with him at home and also be able to identify anything in the future he isn't doing at the appropriate time so we don't fall severely behind.

Wednesday, January 28, 2009

6 month shots/check-up

I have one cranky baby on my hands this afternoon. Oh my goodness. After about 7 hours away from home today Rhys has had enough. We had his swallow study this morning, and then his appointment for his vaccines/synagis shot this afternoon. The swallow study showed nothing really, except that he is an inefficient eater. Duh, what have we been saying all along?!? No reflux showed up while he was taking the bottle with contrast, and he attacked it (probably because he was starving from only taking 10 ounces yesterday and not eating much this morning). But, as soon as we hit the lobby he started doing his typical refusal to eat his regular milk. The speech pathologist was not present to witness the test, but the doctor filled her in over the phone. She then wanted to talk to me and suggested speech therapy to work on the eating. We have a therapy consult scheduled tomorrow so I am going to ask about that. We need to get that ball rolling!

Rhys also got his 6 month and synagis shots today. The poor boy is not feeling well this afternoon. :( This was a new doctor in the high risk clinic and I really liked her. She told me she took care of Rhys once while he was in the NICU (they rotate in the NICU on occasion) and she has seen him eat and remembers how hard it is and feels our frustration. THANK YOU! Cody and I have been saying all along that something else besides reflux is going on and this isn't normal - we felt like a doctor needed to see what was going on. We were really close to video taping it to show them what we got through most every time he eats. Even if he outgrows his current problem his weight gain is very important right now, he has to gain weight to grow out of it, and he needs to be gaining more weight than he currently is. He is on the minimal side of the range they want and it takes a Herculean effort on our part to just get that. I am so glad this doctor is familiar with Rhys in this capacity. She said that Prevacid takes 2-4 weeks to see the maximum benefit so she wants to see us back in two weeks to see if it has gotten any better. She is very concerned about him getting enough to eat based on what I told her today. If the Prevacid doesn't work there are several other options, including a temporary feeding tube if necessary (sounds worse than it is). Cody and I are to the point we would welcome that if it made it easier and less of an ordeal for Rhys. We just want our little man to gain weight and grow so we can get past this stage. She also suggested trying to give him small amount of cereal twice a day even though he is still a bit young. Not as a substitute for milk, but possibly could help with the reflux. So, once he's over his shot nastiness we will try the cereal and see if he's interested. He weighed 9lbs 12oz naked today, so he's gained a few ounces. At least we're not losing weight. We just want to know what the heck is going on. We can and will continue to deal with it, I just want to make sure it isn't something more serious that needs attention because we all know these preemies don't need help developing complications. :o)

Other than that she said he looks great. He has good head control and is doing what he should be. I ran into my OB on the way out of the hospital. He hadn't seen Rhys in months and said he looked really good. Oh, how preemie moms love to hear that!

Sunday, January 25, 2009

More smiles

The little stinker still only gives these smiles for his Daddy.
Rhys had a baby shower on Saturday (where he completely racked up) and
great grandma and grandpa came in for the occasion. Great grandpa Logan... Rhys' namesake.

Friday, January 23, 2009

Bucket List

This is a "bucket list". I got it from Jodi (Olivia's mom). I thought it was neat, and (like Jodi) I don't have much else to talk about so here goes. The idea is to highlight or change the color of the items you've completed. I think you're supposed to tag people, but just feel free to do it, I think it makes for an interesting read.

1. Started your own blog. - clearly I have a blog :)
2. Slept under the stars. - I've slept in a tent under the stars, I will count that.
3. Played in a band. - Jr. High clarinet, 1st chair baby! haha
4. Visited Hawaii. - No but it's on the list. When Rhys is safe to fly in 20 years that will be our relaxing destination. It was in the running for the honeymoon though.
5. Watched a meteor shower.
6. Given more than you can afford to charity. - Sadly I have not done this in a monetary capacity, but I volunteered a ton in college and even some after I graduated.
7. Been to Disneyland. - No, but again, when our rug rat is safe to fly and old enough to enjoy it we're there!
8. Climbed a mountain. - Climbed a mountain on a train to the top of Pike's Peak. ??
9. Held a praying mantis. - I don't do bugs.
10. Sang a solo. - Absolutely not. I do not have a voice other people would care to listen to and I'm not afraid to say it.
12. Visited Paris. - Twice. My favorite city. Ahhh, I loooove Paris.
13. Watched a lightning storm at sea.
14. Taught yourself an art from scratch.
15. Adopted a child.
16. Had food poisoning. - I've been remarkably lucky with my health.
17. Walked to the top of the Statue of Liberty. - We missed this when we were in NYC.
18. Grown your own vegetables. - Cody likes to say we have a brown thumb. I have tried herbs, but the bugs always get to them before I do.
19. Seen the Mona Lisa in France. - And the little guards with machine guns. Twice, love the Louvre.
20. Slept in an overnight train.
21. Had a pillow fight.
22. Hitchhiked. - Too chicken.
23. Taken a sick day when you’re not ill. - I like to refer to these as mental health days... which are necessary to keep yourself from NEEDING a legit sick day.
24. Built a snow fort. - Haha that would require snow and Colorado didn't have any when I was there... neither did Alaska come to think of it.
25. Held a lamb. - I'm sure I've done this.
26. Gone skinny dipping. - I barely get into a bathing suit, much less go in my birthday suit.
27. Run a marathon. - Again, running is not something I am good at.
28. Ridden in a gondola in Venice. - On my European tour list.
29. Seen a total eclipse.
30. Watched a sunrise or sunset.
31. Hit a home run. - Sadly no, my years in softball never produced a home run.
32. Been on a cruise. - Alaska and Cozumel.
33. Seen Niagara Falls in person.
34. Visited the birthplace of your ancestors.
35. Seen an Amish community.
36. Taught yourself a new language. - I tried to "teach" myself a few words of French before our honeymoon... laughable effort.
37. Had enough money to be truly satisfied. - We've been very lucky.
38. Seen the Leaning Tower of Pisa in person. - Didn't make it to Pisa... saw Capri though and I think it was much better.
39. Gone rock climbing.
40. Seen Michelangelo’s David. - On my future European tour.
41. Sung karaoke. - I hid behind the rest of the group.
42. Seen Old Faithful geyser erupt.
43. Bought a stranger a meal at a restaurant.
44. Visited Africa. - I leave this to Cody, he is the Africa expert.
45. Walked on a beach by moonlight. - On vacation in Florida... nothing romantic about it.
46. Been transported in an ambulance.
47. Had your portrait painted.
48. Gone deep sea fishing.
49. Seen the Sistine Chapel in person. - Beautiful, but not what I expected.
50. Been to the top of the Eiffel Tower in Paris. - After Cody guilted me into it. My back hurt so bad and I just wanted to sit on the mid level and wait for him to get back.
51. Gone scuba diving or snorkeling. - Always wanted to get SCUBA certified.
52. Kissed in the rain.
53. Played in the mud. - Always as a kid. I was the queen of mud pies.
55. Been in a movie.
56. Visited the Great Wall of China.
57. Started a business. - ?? I used to paint shirts and sell them when I was younger. Crazy.
58. Taken a martial arts class.
59. Visited Russia.
60. Served at a soup kitchen.
61. Sold Girl Scout Cookies.
62. Gone whale watching. - In Alaska. Pretty cool.
63. Got flowers for no reason.
66. Visited a Nazi Concentration Camp.
67. Bounced a check.
68. Flown in a helicopter. - To get to the top of the glacier in Alaska.
69. Saved a favorite childhood toy.
70. Visited the Lincoln Memorial.
71. Eaten caviar.
72. Pieced a quilt.
73. Stood in Times Square. - New Year's Eve with all the other crazies. Cody proposed. :)
74. Toured the Everglades.
75. Been fired from a job.
76. Seen the Changing of the Guards in London. - Ditto European tour.
77. Broken a bone. - I sort of fractured my finger playing softball. Hurt like the devil.
78. Been on a speeding motorcycle.
79. Seen the Grand Canyon in person. - Been close...
80. Published a book.
81. Visited the Vatican. - Wow! And I'm not catholic.
82. Bought a brand new car. - Twice, with my own credit! Woohoo!
83. Walked in Jerusalem.
84. Had your picture in the newspaper. - A few times when I was a kiddo.
85. Read the entire Bible. - Only some.
86. Visited the White House.
87. Killed and prepared an animal for eating. - Ewe.
88. Had chicken pox. - Have the scars to prove it.
89. Saved someone’s life.
90. Sat on a jury.
91. Met someone famous.
92. Joined a book club.
93. Lost a loved one. - Baby Bentley.
94. Had a baby - I've had two beautiful babies, and God willing a couple more.
95. Seen the Alamo in person.
96. Swam in the Great Salt Lake.
97. Been involved in a lawsuit.
98. Owned a cell phone.
99. Been stung by a bee.
100. Read an entire book in one day.

I guess I'm not as boring as I thought I was...

Thursday, January 22, 2009

Prevacid - day two

This about sums it up...

Not much new going on. We're on day two of the Prevacid, and while it seems to be helping some with the potential reflux issues, it has done nothing for Rhys' tummy problems. In fact, that has majorly flared up again in the last 24 hours. He slept very little last night, and what he did sleep was not restful. He squirmed, moaned and grunted most of the night and quite a bit of the day. He was sooooo tired today. There seemed to be significantly more air shuffling, why I don't know. But, he hasn't been fighting the feeds as much (unless it is related to a tummy issue) and I haven't really seen him do his hacking/swallow episode that seemed like something was caught in his throat and he was trying to keep it down.

We have an appointment next week for the upper GI and swallow test so maybe they will be able to help us with the tummy problems as well. I am still feeding him every hour and a half to two hours during the day to make sure he is getting enough volume, but he is still falling short of his 20-22 ounces. By noon today he had only taken about three ounces and he really did not want to eat. He had a dirty diaper though and then his appetite seemed to pick up a little. He is significantly shy of what he should be taking per feed as a 2-3 month old, but I don't know if that is a Rhys thing or a preemie thing. Hopefully the PT/OT we set up with be able to address that and give us some help. We had a visit from the home health peeps today to download the apnea data and we also got a call from the Synagis people saying the insurance approved the shot and they are trying to get in touch with the clinic to deliver the meds. Rhys' 6 month boosters and Synagis shot are scheduled for next week. Oh boy. I hope he doesn't have a reaction like he seemed to have with his 2 month shots. I am not sure I can handle a semi-sickly baby on top of the tummy and feeding issues we already are dealing with.

Tuesday, January 20, 2009

Back from the doctor

Much better appointment this time, no waiting for 2 hours - even as a walk-in!! This was my first experience as a mom with an infant and no help. And yes, I was one of the crazy looking people who seemingly don't have it together! Rhys doesn't like his stroller (he doesn't like being strapped down in the car seat either), so imagine me carrying him in one arm and pushing the stroller with the oxygen and apnea monitor with the other all the while trying to keep his cords from getting tangled. Nice.

Anyway, Rhys has gained a little more weight than I thought, which I was happy about. We are up to 9lb 12oz with our clothes on, so now I know our scale and the doctor scale are a couple ounces different. She said he had acceptable weight gain of about half an ounce a day since his last visit, but it is on the lower end of the range. We need one ounce per day, but whatever... he's gaining, that's all I care about. Yesterday was horrible for his feeds, and today is no better, but I am trying to feed smaller amounts more frequently and that is working some. The boy has to be starving. He usually takes 20-22 ounces a day and yesterday he only took about 15. The doctor has discontinued the Zantac, we are switching to Prevacid and also doing an upper GI and swallow study. THANK GOODNESS! I hope this gives us more insight. The doctor still thinks his hernias look great and doesn't feel like that is his problem. I believe that; however I still know he screams when I hear air shuffling down there. They did an O2 saturation check at the office and little man was satting 99 on his quarter liter. Sweet! Hopefully that means we will be off the diuretics and oxygen sooner rather than later.

I swung by the NICU to say hi to some of Rhys' nurses since the doctor is right there. Every one keeps saying how big he's gotten. I guess he has - he's gained about a pound and a half since he left. The head NICU doctor came out to say hi and he said he looks great. All preemie moms loooooove hearing that, it can't be said enough!

Monday, January 19, 2009

Now we don't want to eat

Little man has decided he doesn't care to eat. Yesterday and today have been a nightmare during his feeds. He gets the first 20cc down and and then he wants no part of it - he starts sharking his head, screaming, or presses his lips closed. Volume wise he ate decently yesterday, but only because I was feeding him more often. Today, no such luck. I called the doctor this morning and she didn't really seem concerned, but told me to bring him in tomorrow (they don't have clinic today) and she'd check him out. This unwillingness to eat does nothing to calm my concerns about his weight. The scale came in by the way and I was right, assuming the doctor scale and this scale are fairly close he has only gained an ounce or two since our last doctor appointment two weeks ago. Not so good. The only thing that is keeping me from flipping out completely is that he has gained a little over a pound in the three weeks we've had him home and THAT is acceptable. His feeds are taking increasingly longer (about 40-45 minutes) and it is a constant struggle to keep him from fighting it. It shouldn't be this hard. He is usually so good at taking his meds and he won't even open his mouth for that anymore. I haven't noticed any other weird behavior, and he doesn't have a temp, so this has started me thinking of reflux again. The Zantac obviously is doing nothing that I can see, so I am going to ask to try something else or send us to get tested or I'll do it on my own. One of Rhys' primary nurses I keep in contact with mentioned this all to the head NICU doctor who took care of Rhys since his birth. He suggested Prevacid, so I am going to bring that up to the pedi tomorrow.

We've mentioned before that he has enormous hernias and I constantly hear air shuffling in that direction. I am not sure if that is hurting him and causing him to cry, is a strange sensation and is causing him to cry, or is completely unrelated to him not wanting to eat. You can usually hear the gurgling/air shuffling while he is screaming though, which leads me to believe it is in some way related.

Sunday, January 18, 2009

Anatomy of a smile

Cody has been telling me Rhys has smiled at him a few times, but I hadn't seen it. Last night I sat and talked to Rhys for a good 30 minutes. He got so excited and looked like he had to much to say, but I still didn't get a smile. He is trying so hard to talk more than his occasional cooing, so I think once he starts he's never going to be quiet. Here is our first smile session that we could capture on camera. He sat and smiled at Cody for a good 10 minutes.

Friday, January 16, 2009

Happy 6 months to our sweet baby boy!

Little man is half a year old today. What an accomplishment considering where we started. Also as of today he has been home with us for three whole weeks. My how life has changed. Rhys has really surprised me with just how quickly he started reaching some of his milestones once he got home. From rolling over to interacting with his play gym to occasionally smiling and talking to starting to raise up while lying on his tummy... he has wasted no time! Though he isn't doing everything he should for his corrected age, he was in the hospital for more than 5 months so I think we can give him a break!

Our initial ECI consultation is at the end of January, then followed by the assessment to see if he's qualified. That seems like a no-brainer to me but we'll do what they require. I am also going to contact the private therapist to see if we can't get something set up for him as well. I am still worried about his weight, but Cody tells me I shouldn't be. We're pushing him a bit with his feeds, and he is now taking about 3 ounces per feed more times than not. Very good! They shipped his scale yesterday so hopefully we should be getting it soon. He does look like he's growing though, in length maybe if not weight. Enjoy the pictures and have a great weekend!!
This is the only time Mommy
and Daddy can get anything done.
I wasn't really sure what to think
when I saw myself in the mirror.
I was mad at Mom for putting me
down and look what I started to do!

Wednesday, January 14, 2009

I've been tagged

I have been tagged by Jodi, Olivia's mom. The game is to show and explain the fourth photo in my fourth "pictures" folder. Technically, the first one is the winner, but since the folder was never actually named and is being filed as the date the pictures were transferred to the computer I will show you two.

Fourth picture in the fourth folder: This is breakfast the day after our wedding. We were at the hotel, where we and most of the family stayed, and we were having breakfast together the next morning. In the picture you see (sorry Amy) from left to right, Cody's uncle, his sister and his mother. Just a note that this was three and a half years ago. Luckily I was in the THIRD picture in the folder and not this one because let me tell you, I was looking all kinds of good that day!! :o)
If all picture folders had been labeled and not left to the default file transfer date this is the picture you'd have seen. This is the "before" shot of our master bath when we bought our house... right before we ripped everything out and replaced it!

Tuesday, January 13, 2009

The swing is our friend!

Rhys likes, no loves, his swing. Thanks auntie M and uncle D. He has been a little better the last few days, sleeping 5.5-6 hours at night. MIRACLE! He is becoming better at letting us lie him down once he's asleep, his eyes don't always pop open as soon as you put him down, and he is taking better naps throughout the day. He is still having tummy problems, but thankfully not to the extent that he was late last week. He doesn't do the full out wailing scream except for seconds at a time, and instead now does the pathetic whine with the lip quiver. It is funny now because he does that when he is tired, and we are starting to be able to recognize his different sounds.

Though I don't have any basis for it I am worried about his weight. I don't feel like he's losing weight, but I don't know that he's gaining any either. He is eating well and I really have no cause for alarm, but I have decided to purchase a scale so we can keep a better tab on how he's doing. I will not become obsessed with it, I just want to make sure he's doing okay more frequently than every few weeks when we see the pedi. Though he is averaging on the high end of the hospital goal (about 2-2.5 ounces per feed) it seems low to me. Anything more than that and it's like he's stuffed to the gills. He is still on fortified milk so he is getting more calories, but I worry all the same. He didn't have any spit up today, but did twice yesterday. Very random, we can't figure it out. We thought maybe it had to do with us giving him his meds when he eats, but that was just a thought. (Someone asked about him taking his meds and luckily he does it like a champ! He starts licking at the syringe and swallows and takes his meds very well so I am hoping that is a good sign for when we start introducing a spoon.) We also noticed today that his mouth and nose got red while he was eating and then went away. Not sure what that's about, I hope it isn't an allergy. I haven't eaten anything in the last 24 hours or so that I haven't eaten before.

For some reason I can't keep to my pumping schedule. You'd think it would be easier since I don't go anywhere, but I am doing good to remember to brush my teeth every day. I am not the neatest of people, but I never thought I'd be this frazzled and disorganized. The doctor mentioned trying to breastfeed but that sounds alien to me since I've strictly been pumping the last 6 months. Aside from wondering if he was eating enough it just seems plain weird even though countless people do it all the time. My body has not been my own for a year now, but I am going to try to continue pumping at least through RSV season. Hopefully I can stick with it that long and Rhys will be eating regular food by then as well.

Oh, Cody said Rhys smiled at him today. Three times! I didn't see it, but that is a first since he's only smiled thus far in his sleep.

Sunday, January 11, 2009

Colic or reflux?

After getting little to no sleep Thursday and Friday night, Cody and I paged the doctor Saturday morning. Rhys had literally screamed all night, both nights, and he was miserable - and we were exhausted. The doctor told us based on what we were describing she thinks it sounds like colic, which of course has no remedy. I'd been thinking this for a while, but I am no doctor. She called back this afternoon to check on Rhys (which I was impressed with) and said as long as he is eating, doesn't have a temp, etc. that their crying doesn't coincide with the amount of pain they're in. I read that also, but at the time it sure sounds like their pain is legit. Colic peaks at 6-8 weeks and usually goes away around 3-4 months. Rhys is over 8 weeks adjusted so I am hoping we're on the tail end of it. Saturday day was also horrible, but Rhys did sleep a bit last night. Cody and I have decided to divide the night so we can both get a small bit of uninterrupted sleep. It worked pretty well last night so we're going to continue it until Rhys gets on a schedule, which will most likely be when he no longer has to fight his tummy issues. Lucky for me (poor Cody) Rhys decided he'd sleep 5.5 hours together on my shift and I let him because we were both so tired! Today was okay, he has been only moderately fussy. He has sort of switched from the full out wail to the whimpering cry which is easier on the ears, but seems to pull at the heart a little more.

Ever since we started the Zantac I've noticed that Rhys spits up significantly more volume when he burps. Before it was a tiny amount, but now it is enough to require him or Cody to change their clothes. For some reason he hasn't spit up on me yet, but Cody feeds him more frequently so maybe mine is on the way. This happens about every other feed, which seems pretty significant. The doctor knows about the spit-up and said she was going to call us later in the week to see if we feel like the Zantac is doing anything. Not sure if the timing is coincidence or if the Zantac is causing him to spit up more. If he had reflux I'd think the meds would keep him from doing that. Strange. And, since we started the Zantac I stopped my 'round the clock doses of gripe water. I started that again yesterday morning, so hopefully that is what has given him a little relief. Poor little man. THAT is where the quivering lip came from. :o)

Friday, January 9, 2009

Picture update

If only I were this good ALL the time.
I think I've got the pathetic lip quiver down!
I've got a few goofy faces too.
And some pretty blue eyes to boot!
I really don't like that darn apnea monitor though.
I'm still fighting with my cannula and
my face is taking the brunt of it.
Hanging with my Daddy.
We're a couple of handsome fellas aren't we?

Wednesday, January 7, 2009

5 months 3 weeks 1 day old

Rhys had his follow-up with the high risk clinic yesterday. After waiting an hour and a half to see the doctor (yes, I am not kidding) she said he looked good. We had planned on using the high risk clinic as his primary pedi for the short term to eliminate having to shuffle back and forth between two while he is on oxygen and getting all his shots, etc. But, if that wait is typical we will absolutely not be using them. I can only imagine trying to wait that long with a sick child. It's hard enough keeping him from screaming when he is perfectly well.

Anyway, she asked what he was "doing" at home and seemed happy that he is rolling over from tummy to back in both directions, talking a little and swatting his animals on the play yard. She said he should be smiling at us at this point, but she isn't worried since everything else seems normal and he has been in pain because of his stomach so maybe he doesn't have anything to smile at! He has a bit too little tone in his back and and arms and a little too much in his legs (which we knew), but she too thinks therapy should be able to correct everything she sees at this point. She thinks it is great he can lift his head so well while lying on his tummy and seemed impressed he can occasionally bring his head with him when you try to lift him by his arms when he's on his back (that is usually around 4 months). She felt like Rhys' behavior seemed like reflux so she gave us Zantac to try. I was willing after being reassured it wouldn't cause problems if it happened that Rhys doesn't have reflux. If this doesn't work she said we could try something else and/or do a swallow study to see what the deal is. This might address some of his arching, etc, but I still haven't figured out how reflux is related to the gurgling tummy. We'll see what happens. For Rhys' sake I hope this is a quick fix, but I have my doubts.

We still haven't gotten a call from ECI, so we have no idea how the therapy component of all this is going to go. We should hear from them within the week. I think we are also going to see a "normal" therapist who specializes in preemies in conjunction to make sure everything is going as it should.

Meanwhile, Rhys seems to be settling in a bit more. He is okay with us not holding him for longer amounts of time every day. He is also sleeping pretty well at night; however between a snoring husband and a baby that make crazy noises all night it is hard for me to fall asleep. :o) We're still doing well with feeds, although he seems to have learned how to play with the bottle. He will act like he is super hungry, but then will only half-heartedly suck and it's like he's smiling at you knowing what he's doing. What a monkey! He weighed 9lb 4oz with his clothes on at the visit yesterday, so I would say he is very nearly 9 pounds. Not too bad considering we were having problems with him eating!! He has gained almost a pound since he left the NICU (less than 2 weeks!). He is on the shrimpy end of the growth chart, but the doctor said he should catch up. Considering they didn't actually try to "grow" him for several weeks after his birth, and the weight loss we experienced while playing with non-fortified formula prior to discharge, I am happy he's on the charts at all.

Sunday, January 4, 2009

More of the same

Unfortunately for Mommy and Daddy this is
really the only way I will sleep for any length of time.

But, sometimes they can sneak my Boppy in on
me and I don't notice right away.

When I'm not screaming I do like my play gym.

I even talk to my friends and swat at them!

As I type this little man is lying in his Daddy's arms screaming. We haven't figured out what it is, but there seems to be a pattern of sorts. His tummy really starts gurgling (is the only way I know to describe it) in late afternoon and continues into the night. The nurses always told us he was up from 2am until early morning, and given what we've discovered I do not doubt it. We knew he had tummy issues because we could hear/see it when we visited at the hospital, we just didn't know to what extent until we got him home. Obviously we are not experts but this is not normal. Friday Rhys basically screamed from midnight until mid-morning. The only time he was remotely calm was when we were holding him. That has been the worst of his "episodes", but this is exhausting! We see the high risk pedi this week so I am really hoping she has some thoughts because Rhys is miserable and Cody and I are right there with him. His apnea monitor alarms every so often, but it must be because Rhys was taking shallow breaths because we've pretty much been holding him every time it's happened and his chest was moving. Luckily Rhys didn't really have apnea problems in the hospital, so Cody and I don't flip out when it goes off, but nonetheless it gives us a little peace of mind.

Overall he continues to eat well. We are consistently within the upper range the doctor wanted him be in, at about 2.5 ounces per feed. We are slowly increasing the amount we put into his bottle (by 5-10 cc every few days). For the early morning feeds he doesn't typically take as much, but during the day he usually finishes the whole thing. We are also figuring out how to help him burp without him spitting up, although occasionally he still has the "wet" burp and spits up a tiny bit which doesn't concern me. Rhys is now rolling over from tummy to back in both directions. It isn't an immediate reaction and I think sometimes he forgets he can do it until he gets so mad, over he goes and then he scares himself. He hasn't rolled from his back to tummy yet, but today he was sideways and oh so close. He has yet to smile at us directly, but he always smiles in his sleep.

Attacking the nasal cannula seems to be a daily endeavor. Rhys constantly has his fat little fingers on the tubing, or up by his nose and has ripped the tape off his face on several occasions. He is still arching, but we correct him and make him loosen up when we see he is doing it. It seems that he isn't doing it quite so much, but unfortunately it is still a problem. Especially when he is in his car seat or swing. The other day I walked in to check on him in his swing and he had tightened his legs and somehow raised himself up against the back of the swing. Essentially he was standing in the swing while the darn thing was moving! Scared the absolute mess out of me and I immediately cinched the belt even tighter so that now he has NO wiggle room.

Today we had our first family "outing" together - we went to Sonic to get a slush! I realized on the way that this was literally the first time I've stepped out of the house save for his doctor appointment last week. Pathetic! We've been watching the weather for a good day to take him in his stroller around the block, but every time we've had the energy the wind is blowing and it's too cool outside.