Life with Rhys

I got in a fight with my cannula. I won the right cheek, the
cannula won the left cheek, so I took it out on my forehead!

I'm good at the fish lips.

What is there to say? Sleepless nights, screaming fits, mind of his own... Rhys is no different than anyone elses bambino except that he is attached to oxygen and an apnea monitor. We had a quick clinic visit on Monday to check vitals and weight. The doctor was a random that I'm sure we'll never see again (we see his high risk pedi next week since the office was closed for the holidays), but she said he looked great. He'd gained about +/-6oz and was 21.25 inches long.

Poor Rhys. I think the boy just needs a bit to settle in, his world has been turned upside down. But, we're getting there. We are having a great deal more luck getting Rhys to eat. It was a nightmare the first few days, but we're getting a system down now and Rhys is now taking between 2-3 ounces per feed. He still has tummy issues, but good or bad I've been giving him gripe water and that seems to help him a little. It is horrible to watch your child scream in pain and not try to do SOMEthing. The clinic doctor said he'd just have to outgrow it, but I'm not so sure his pains are normal (and I don't think I'm being a paranoid parents here). We will ask the high risk pedi next week to see what she says. If the gripe water continues to work we'll stick with that as plan b.

The cuteness factor of Rhys being spoiled went from off the charts to a big fat zero as soon as we walked into our house. Haha. :o) I can honestly say though that I don't think his screaming fits are all because he is spoiled because there are lots of times he can't be calmed by picking him up or talking to him, etc. Again, I think he's still adjusting. But today was a good day. He slept in his bouncer a little and took a ride in his swing and lasted longer than he had previously before proceeding to exercise his lungs quite loudly. He loves his play gym and has started talking to his "friends" every once in a while. The fans in the house are also something of a novelty to him - who needs all the fun toys, he'll sit and stare at those forever! Rhys has started consistently rolling over when you put him on his stomach. I have only seen him roll to the right, but he's started tilting to the left like he's thinking about it.

As far as sleeping... well, WE are adjusting to a lack of it. Rhys refuses to sleep in his bassinet, and will really only stay asleep when we are holding him. I am sure some of you are saying "yeah right", but then again you've probably never brought home a five and a half month old who has been on a strict (unrealistic) schedule and who has already developed bad habits no one ever bothered to break. We have tried multiple methods and have had no luck so I am doing something I swore I'd never do - we are letting our child sleep in the bed with us. Rhys' eyes pop open immediately as soon as you put him down. This starts a screaming fit that takes 10-15 minutes to calm so we've decided this is the lesser of two evils at the moment. He is sleeping with us in a safe manner, so no worries about him being smothered by us rolling over on him.

Anyway, that's our update! Happy New Year to you all!

PS - Sorry for the crazy photo exposure. We haven't had time to play with the camera settings since we got home so they're still set up for the hospital lighting conditions.

You've come a long way BABY!

This is where we started 5 months, 1 week and 3 days ago...

We stayed cautiously optimistic through the early
days and were never far from your bedside,

but we weren't sure we would ever share this day with you.

You were a little fighter from the start

and you surprised the doctors at nearly every turn.

Mommy and Daddy are so proud of you

for getting your ninja bear to the final black belt.

We've waited 11 long months for this day.

Welcome home sweet baby boy!

To get from birth to home we've experienced:

• 163 days in the NICU
• 3 of the most fantastic primary nurses you'll ever meet, and countless other nurses and respiratory therapists who took care of Rhys
• a multitude of unbelievable doctors who, in conjunction with the Lord Almighty, are responsible for our little man being with us today
• unwavering support from family and friends and the preemie community
• 162 daily visits to the hospital
• 6,300 miles round trip from home to Rhys
• one hurricane
• thousands upon thousands of prayers on Rhys' behalf
• and one tiny miracle!

Words can not describe how excited Cody and I are to say that our little man is finally home!

Merry Christmas!

I had a little accident when my burp brought up some
milk so I had to run naked until my bath.

Mommy hasn't pulled all her hair out just yet.

Mommy knows what time it is.

Merry Christmas to everyone.... It's been a strange holiday, but nice nonetheless. We saw the family a bit today and tonight we do Care by Parent with little man. So far he's been fussy and I don't really look for that to change. He took 2 ounces at his 6pm feed and Cody is feeding him now. He just finished his feed and Cody got him to take nearly 2.5 ounces. Way to go Daddy! Cody has been getting a little frustrated with feeling like he has been doing something wrong, but that isn't the case and I think he's finally starting to see that. If he didn't have such a gassy stomach and wasn't so hard to burp I think he would eat like a champ! Poor guy can not catch a break with his feeds. Rhys' milk has been increased to 24 calorie to help him gain the weight he lost when we started feeding the non-fortified breast milk between 1.5-2.5 ounces per feed. This didn't work so well, so we're back to being fortified and since Rhys is eating better AND having increased calories I'm hoping he starts packing on the ounces again soon.

For those not familiar with Care by Parent, it is an opportunity for the parents to take care of their baby across the hall from the NICU. It serves as sort of a trial run for you to do everything by yourself, learn the equipment (if applicable) they are going home with, but still have hospital staff available to you if necessary. The rooms you stay in are provided by Ronald McDonald House and are set up like hotel rooms. Ronald McDonald also has a lounge for the parents of the patients and provide snacks and occasional meals to the families. When not being used for Care by Parent, the rooms are available to the families to stay in free of charge. This is an unimaginable help for families such as us.

More to come... I'm sure tonight will be a sleepless night as we adjust to Rhys and do this while in an environment that isn't home.

5 months 1 week

Rhys hanging with DaddyAttempting the hospital bottles a few days ago...
He didn't appreciate the cheek support but
couldn't do it on his own with these nipples.

First, thanks to everyone for their suggestions. Believe me, I have checked them all out! Today was a better day for Rhys' feeds. He had a pretty good night and then was more consistent with the amount he took today. In addition to him having problems keeping his mouth sealed I think he was not getting enough milk and he was getting frustrated and sharking his head back and forth. Cody and I stuck with the Born Free bottles (since we already had them) and bought the level 2 flow nipples to try to get past this issue. The nipples for these bottles go from 1 to 5 so this one is slightly more than 1, but definitely not fast flow. It seemed to work quite well today so we're hoping it isn't a fluke. Rhys was much more calm while eating (except when fighting his tummy pains) and was doing well pacing himself with sucking, swallowing and breathing. He took 2 ounces at his 6pm feed in 20 minutes with little interruption. Woohoo! Hopefully this will do the trick and we can move forward with his feeding. Who knew choosing bottles was such a pain??

Rhys got his Synagis (RSV vaccine) shot yesterday, to the tune of a couple thousand dollars. I'm glad we're not having to pay for that. Overpriced drugs are something I get on a soap box about so I will leave it at that. There are 6 shots throughout the year for the vaccine and he will finish out the rest of this year (three more shots I think) and then start again next season. He also got a consult from the pulmonology team today. They were called in to take a look at the chronic diuretics Rhys has been on for the last couple of months. They said they agree 100% with how Rhys' doctor has handled things and also said his lungs "sound great". This is amazing to me given the degree of chronic lung disease Rhys was fighting. The team would like to follow-up with Rhys after discharge to monitor his oxygen and diuretics and eventually discontinue them. She told me that once these babies hit the 11/12 pound mark it is amazing how fast they progress. We will get an x-ray and blood gas before discharge for a baseline for comparison purposes.

The oxygen concentrator was delivered today and I was pleased to find out that it isn't an enormous oxygen tank like I was anticipating. Instead it is a smallish rolling cart that can easily be moved from room to room. In addition we will of course have the portable tanks for when we're away from home. I am feeling better about the home oxygen. My biggest concern was that I thought Rhys was going to be sort of tied to one room or the other but that isn't going to be the case. We have a 25+ foot tubing, plus the flexibility of moving the cart around the house. I am even feeling really good about his oxygen saturation lately and rarely look at the monitors at the hospital anymore. After him being attached to this thing for the whole of his life, this is a big deal!!

A case of the Mundays...

Being that it's Monday the regular doctor took over again from the weekend replacement. Last week Rhys' doctor specifically said absolutely not to the OT's suggestion that they thicken Rhys' milk to make it supposedly easier for him to eat. Somehow the OT got the weekend doctor to write an order for it (when Rhys did so terrible with his feedings) and today the normal doctor came back and was none too happy. The milk was so thick he couldn't really get it out of the bottle, so when the doctor discovered that this morning they switched him back mid-feed so he had to take the remainder of the feed with regular formula because his milk had already been mixed for the day. So, a whole day's worth of milk (with the thickener) was tossed. Boo, it's hard work getting that milk my friends.

Anywho, today we tried a few different types of bottles trying to help Rhys out with his feeds. I had planned to use the Playtex drop-in system since I already wash a ton of pumping supplies and would like to not add to that by having to sterilize a bazillion bottles a day. Cody also went to get the wide neck Born Free bottles. The hospital uses the standard single-use bottles with a plain jane nipple... probably not a bad deal for kids without Rhys' problems. The goal was to give Rhys a larger base on the nipple in hopes that it will help him with keeping his mouth sealed. He did well with both bottles, and didn't fight the feeding nearly as much. The Playtex seemed to work a little better, but how the heck are you supposed to measure how much he's eaten? We had to keep pouring it into the hospital bottle to see how much was left. Similar story with the Born Free. So, by the end of the night Rhys had both bottles to try, along with two different nipples for each one. If only we could get the boy to be interested in food now! So, he took 1.5-2 ounces for the noon and 3pm feed and then at 6pm he wasn't at all interested in eating, he was too busy snoozing. *sigh* Try imagining 30-35 minutes per feed, every three hours. And during this time you're trying every traditional and some not-so-traditional feeding positions and all but begging your child to take just a little more. It is very frustrating. He is totally capable of doing it, he's done it plenty of times before. But, there is no quick fix to this problem. More than anything I am worried about Rhys losing weight (the doctors are keeping a close eye on it), if we have to stay in the hospital a bit longer I am totally fine with that.

Rhys cooed for the first time today - twice! He was crying when we came in today so I picked him up and was just a talking to him. He was staring at me like he knew what I was saying and he so looked like he wanted to talk right back when all of a sudden he cooed. Oh gosh it was very unexpected and oh so cute. I think it surprised him too. Speaking of talking, we also had a nice long talk Rhys' doctor today. She was not at all discouraged with what happened on the weekend, in fact she said she was sort of expecting it. On Friday she felt like Rhys wasn't acting like himself so she thought he might be getting sick. So far that doesn't seem to be the case (thank you Lord!). She also does not think Rhys' problems stem from reflux because even though there can be reflux without spitting up, she doesn't feel like Rhys is exhibiting any of the other signs. Instead, she thinks Rhys' problems are something he is going to have to outgrow based on what he's been through. She said there are some signs of CP, like tightening in Rhys' trunk and in the way he sometimes arches, but being that he is so young you do not diagnosis it at this point. After overcoming so much with Rhys this is one of the major things Cody and I were dreading having happen. But the doctor was very positive and said she feels like it is something that therapy can correct, and already he seems to not do certain things as badly as he used to. His hands and feet are not tightly curled and he loosens up and "slouches" when he's sitting. He is very alert, is acting age appropriate, and she does not feel this will effect his cognitive ability in the least. She said he should still meet all of his developmental milestones, he just might be a bit delayed. Of course only time will tell, but I am already anxious to start working with little man to try to help him out.

The home health peeps came to the hospital today to give Cody and me training with the apnea monitor and portable oxygen, and the home oxygen tank is being delivered tomorrow. Rhys passed his car seat challenge last Friday (with a little help from Mom and Dad holding the pacifier the whole hour). Woohoo! We got his meds from the pharmacy today and got CPR training finished. All we need is to do Care by Parents so we can finally walk out the door with our little guy! Still no definite date nailed down for Rhys to come home, but we're inching closer and we are prepared for when that happens... the question is when will Rhys begin to cooperate?! They sure do start ignoring your instructions at an early age.

5 months 5 days old

We had a pretty good weekend, except Rhys has decided he isn't too interested in eating as much as he should be. The doctor changed his orders a few days ago so he now only has to take a minimum of 1.5 ounces per feed. The minimum is all the night nurses are feeding him so he is starting to lose weight. He is very difficult to feed, so we think the nurses might be a bit on the unmotivated side and they choose to not mess with him and only give him the 1.5 ounces. During the day it is still a challenge, but we can typically get him to take at least a little more than that. He took 70cc this morning and averaged about 55cc per feed until the 6pm feed when he only took 30cc. I just called and the night nurse said he took only 20cc at his 9pm feed and he lost weight again so if he doesn't do better at midnight they are going to have to put the feeding tube back in. Unfortunately, I feel like that is all but certain with the way he's been eating lately. Several people have mentioned the possibility of reflux, but he doesn't spit up so it isn't something many people have thought of until now. I guess that will require more testing. *sigh* Christmas or not, we're so dang close!!!

Still working our way towards the door...

As I sit here holding my rotten little man I am thinking about all the things that have gone on since this little guy came into the world with twin brother Bentley much too soon. Cody and I jokingly tell everyone how spoiled Rhys is and how he always wants to be held, but truth is I am thankful we are able to hold him whenever we please. It wasn't so long ago that wasn't the case. I am actually proud of the fact that Rhys knows the difference between being loved on and being left sitting in his crib. That speaks volumes about our involvement as well as the level of care provided by the staff at the hospital. I have a new found respect for physicians, nurses and respiratory therapists. Before this experience doctors were people I saw once or twice a year for a routine checkup. I am blessed to be a very healthy person so my first stay in the hospital was when the boys were born. I am thankful that doctors have the dedication they do, for without them our little man would not be with us. The nurses and respiratory therapists are amazing people in their own right. They are the ones in "the trenches". The doctors make the decisions, but these people are the ones responsible for carrying out the orders. I understand that this is their job, but what amazing people they are to go to work each day to help our little people fight. I'm sure all you preemie parents out there can relate. So, to all those ladies and gents who have ever taken care of Rhys, Cody and I say thank you from the bottle of our hearts. :)

As far as Rhys goes, he is still doing great and we're still working towards going home. He's sort of slowing down on the amount he takes during his feeds, but I think part of that is because he is fighting his upset tummy while eating so you constantly have to battle his arching and crying. The doctor changed his orders to minimum of 1.5 ounces to max of 2.5 ounces per feed. I am really hoping the fortifier is the reason for all his problems and he will lose the tummy issues in a day or two once he works the last of the fortifier out of his system. The nurses are also telling me that Rhys has his nights and days mixed up since he likes "to party" from 2am to about 7am and then sleep all day. We're really going to have to get that fixed ASAP because Mommy's schedule doesn't work that way! Soon we will also be doing our car seat challenge. I am a little worried about this one since Rhys tends to get really angry and sometimes desats. If this happens he will fail and going home will be delayed. I guess I'm going to have to hold his pacifier for the whole hour so he stays calm. That's about it as far as news. Please remember to keep Baby Bella in your prayers. Her family is going through a rough ride right now as they are closing in on the two weeks of life mark. At two weeks of life for Rhys we were being put on the oscillator and starting our 6 weeks of 2 steps forward and 2 steps back. My, how far we've come.

In closing, my thought of the day... You can never kiss and hug your kids too often. It's hard to realize how special that is until you don't have the ability to do it!

5 months

My ninja bear got a belt upgrade today! Only one more to go!! I didn't really want to wake up to eat so I rolled away from my Mommy.

Here's my fish lips...

Rhys is 5 months old today. He has been taking all his feedings by bottle since Sunday and he's doing well. Between him fighting his stomach pains and his difficulty burping it is sometimes a challenge to get him to take his 2+ ounces, but he's doing it all the same. He's weighing 8 pounds 5+ ounces and is filling out his 0-3 months clothes very nicely. The ninja bear got a belt upgrade to brown today for 8 bottle feeds/day. Only one more to go and that is when we go home!! Speaking of, the doctors are removing the milk fortifier and trying to wean his breathing treatments in preparation for when that happens. Hopefully sooner rather than later, but we're getting there!

Day of life 150

Sleep Sheep round 2 Mommy's little man Look, no feeding tube!

Rhys was bumped to 6 bottles/day yesterday, and today they have removed his feeding tube all together. They are going to attempt to exclusively bottle feed him and see how he handles it. They are also giving Rhys a little freedom to see how much he wants to eat. Previously he'd been taking 65cc (30cc = 1 ounce). If he didn't finish this amount in the bottle they'd give it to him in the feeding tube. Now they are putting 75 cc in the bottle and letting him eat what he wants. So far he's finished the whole thing. They capped it at 75cc because I think Rhys could be a little porker if they didn't. They want him to gain healthy weight at a pace that will not be more than his lungs can handle. So now he needs to continue to not require the feeding tube, and be able to gain weight on non-fortified milk. Not sure how long this will take, but I do know he's sort of fast-tracked the bottle feeding and has surprised everyone with how fast he's learned.

Rhys rolled over again yesterday. He was mad on his tummy and started lifting up and then over he went. I am waiting for the day he does this on purpose and knows what he's doing. The Sleep Sheep really seems to work for him. I think more than anything it is relaxing opposed to the crying of babies and dinging of alarms.

So, now that you have a clear shot of his face with no tape, who do you think he looks like? Every time he smiles I think he looks just like my brother, much like cousin Julian looked just like Cody when he was born. I most definitely see Cody in him though. We are both really hoping Rhys inherited Cody's dimples. The other day I saw a crease where they should be when he smiled so I hope that's what I saw.

Sleep Sheep

Little man likes to be held.

I'm reeeeealy hoping the Sleep Sheep is responsible for this...

Nothing new today for little man. He was sleeping nicely in his swing when I walked in. Well, he was for about 60 seconds and then he started screaming (without opening his eyes mind you). So, had to get him out of the swing. Of course as soon as he hits my shoulder he is out like a light again. And then it's time to eat, but he's too tired and doesn't want his bottle. He keeps giving me what I call his fish lips. We've previously had to support his chin to help him suck properly, but he's decided he doesn't need that anymore and he'll pull away when you try to help him. I guess he thinks his 8 pounds 2 ounces makes him a big boy.

I am hoping I have found a new friend in the Sleep Sheep. I have seen these things around for a while and have been wondering if they really work. My amazing other half has a propensity for finding these "can't live without" deals online and he came across this little sheep while searching one night. Thanks babe! Since it was $15 with free shipping I thought I'd try it out.... maybe Rhys would like it (secretly I am thinking PLEASE let Rhys like it). I took it to the hospital today to give it a whirl. Right before I left I put Rhys back in his crib and of course he started to protest. So, I stick his pacifier in his mouth, talk to him a little and turn on the whale sounds. Since he was sucking his pacifier he could actually hear the thing and what'dya know his eyes started fluttering and rolling back in his head. I remove the pacifier and stand there amazed. He occasionally lifts his eyebrows like he's really listening, but look at him. He's seriously relaxed. Coincidence?? I sincerely hope not!!

My sweet baby boy

Our little man thinks he's quite the big boy. He can pitch a fit with the best of them. It is so sad that he immediately stops as soon as you pick him up. He certainly is learning at an early age how to get his way. But, he is such a cutie pie.

Nothing much to report tonight except Rhys' eyes look fantastic! The eye doctor examined him last night and she doesn't want to see him again until he is 1! The ROP in both his eyes has regressed. Hallelujah! This doesn't mean he will have perfect vision, but it does mean he will not need eye surgery.

On another note to those who have faithfully been praying for Rhys... Please include Baby Bella and her family in your prayers. She is a 24 weeker who is now one week old. Please read her story and pass it along. And if you feel you can, please drop her family a word of encouragement as they begin the roller coaster ride that is the NICU. The support we received from the readers of our blog helped Cody and me in a way that words can not express, so I would love to help pay it forward. God Bless!

It has snowed in Houston!

For the first time in my recent memory it has snowed. And, though it melted as soon as it hit the ground there was a lot of it. Looking out the window of the hospital it was like a snow globe, specks of white floating everywhere. I took this picture as I was walking to my car tonight. All I can say is that it felt magical. Is that weird? What a strange thing to drive in a snow flurry in Houston.

Rhys is still doing fantastic. He is still taking 4 bottles a day. He weighs 7 pounds 11 ounces and has been between 1/4 liter and 1/2 liters of flow on his nasal cannula. The doctor is very pleased and says he's doing great. As far as I know our goal is still to be home by Christmas. Not sure if we will make that one if we don't start increasing his bottle feeds. But, we're so close! Christmas, New Year's... I don't care. I just want my boy home! We've been trying frantically to get our house and the nursery ready for Rhys' arrival. It's hard to get the house together since we practically live at the hospital. But, somehow we're managing (with a lot of help from family). I've previously mentioned how we've accumulated a few odds and ends for Rhys over the last several months. Well, after starting to organize the nursery I quickly discovered we need more storage. Who would have thought one little boy could have so many things??

Rhys' first bath

I think this is why newborns shouldn't sleep on their stomach. :o) So, I had my first REAL bath today.
I wasn't really sure what I thought at first. What IS this?!?
But then I start thinking maybe this isn't so bad...
And ya know... so what if I actually liked it?

Not sure what this thing is either!

I think I'm wanting one of those every night!

Rhys had his first real bath tonight, in standing water instead of a wipe down with a wet cloth. He wasn't liking it too much at first but then he calmed down and I think he really enjoyed it. I can image it was quite a new sensation since he's never been completely naked and submerged into water. Warm water at that. He was super calm afterwards and fell asleep after only a bit of fussing. He even let me put him back to bed without waking up! I am not afraid to say he is completely rotten. For the longest time he couldn't really be left upset because it would be bad for his breathing/oxygen requirements. Now he handles that aspect better and doesn't drastically drop his O2 saturation, so he can handle us leaving him to soothe himself. Problem is the damage is already done. He knows everyone will give him attention if he cries (especially us and his primary nurses). It's kind of funny, but it won't be when we get him home and he only falls asleep when someone holds him!!

Rhys weighs 7 pounds 9 ounces. He has officially surpassed the weight that I can comfortably hold him out in front of me to "bounce" him to calm him down. My arm starts burning after only a few seconds. He is very nosey (he gets that honest from me) and likes to sit up and see what is going on around him. He is taking 4 bottles now - at every other feed and he is having 2 ounces! Tomorrow the doctor is thinking to take him to 5 bottles and then keep increasing by one more every other day. Way to go little man!! He is doing much better with his sucking and doesn't need as much chin support, though he still can't do it completely on his own just yet. He is also very good at pacing himself and stopping to breathe and swallow. He is sort of hard to burp, but at least he isn't spitting up all over the place!

Preliminary MRI results are supposed to be back tomorrow, but Cody and I have decided we don't want to know what they say. The doctors can have it - now for the study research and later if any of Rhys' doctors need it for anything, but it will not change our approach to what we will do for him. He will have every therapy available to him regardless of what they find so I don't see the point in speculation and forming preconceived notions. Dr. Gloom is conducting the study and we've never left a serious conversation with him feeling anything but defeated. I don't want Rhys to be pigeon-holed and have any one person's opinion on what his limitations will be. It is what it is and the truth is they don't know what he will be capable of. He had a brain bleed, we know everything he's gone through, but we also know what he's overcome. His chance of survival was pegged at less than 15% when he was born. An amazing lady once told us that God is the great statistics blower. Rhys has defied all odds thus far and I feel like he will continue to do so. I just don't want to know right now what one certain doctor thinks those statistics are.

As to when we are going home... right now it looks like it MAY be before Christmas. I am not a superstitious person, and I don't believe in jinxing things, but it was hard for me to type that - I don't want to blow it!

20 weeks

Rhys had his MRI yesterday afternoon. He did well for the most part. They weren't able to get all the scans they wanted; however they did get the critical parts they needed. Preliminary results will be back possibly today, but probably on Monday. Hopefully we will not have to repeat this exercise. While he was getting his scan they bribed him with sweeties (sugar syrup). Oh my goodness I know why they say not to give kids sugar. Rhys was wired when he came back. So much so that he couldn't concentrate on taking his bottle (they had to give it through the feeding tube). His eyes were darting back and forth and he couldn't sit still. He was very over-stimulated.

No other news to report really. Rhys' eyes continue to look good, the veins have made it to zone 3. Hernia surgery is most likely going to be postponed until 60 weeks post-conceptual age, which would be April. They will do another consult with the surgeon prior to Rhys going home. Other than the fact that we would have to be very cognizant of Rhys' hernias waiting would be so much better for little man.

Feeding time!

Mommy feeding Rhys

Trying to burp Daddy feeding Rhys
Sheesh Daddy!

And boy does he burp! It sounds like everything he just drank is coming back up. He is such a funny little guy. We are loving getting to see his personality more each day. Rhys is still doing fantastic! He is taking his two bottles a day very well - pretty much the whole thing. The doctors are waiting until he gets the two bottles completely down before they add on any more. Cody is actually better at it than I am. He says you have to "be firm" with him. This makes me laugh because Rhys (and future children) is going to have, wait already has, Cody wrapped around his little fingers. He is quite rotten, which is as much our fault as his nurses' fault. :o) It's hard not to spoil the guy and love on him all the time since we weren't able to for so long. It's cute now but I am certain it wont be when he gets home and wont fall asleep unless we're holding him. We're working up to a bottle at every feed, and have to address his hernias, but other than that we're counting the days until we can take our little man home! No word yet on when exactly that will be, Rhys will tell us, but we are getting so excited thinking about it. Hopefully he can stay well and keep free of germs and avoid a cold/infection this season. Cody and I are germ freaks (okay so maybe it's more me than Cody) and don't really let anyone (other than nurses, doctors, etc) touch him for this reason. Hard on the grandparents, I know, but I have my reasons. I know it is especially hard when he is doing so well to think everything is now okay, but it isn't. We will be watching everyone like a hawk for the next year and a half at least to keep him as germ free as possible. What is a normal cold for a term baby is pneumonia or worse for Rhys. He appreciates everyone's patience with this matter, it isn't because his parents are paranoid.

Sleepy Sunday

I don't really understand how this is comfortable.Don't his hands fall asleep?

He caught a lot of zzzzz's today...

And then he was fussy.
He's thinking "man my Momma's crazy!".
This is my favorite. He looks so content.

Rhys had a great weekend. His oxygen was lower this weekend than Thursday and Friday. He was on 2 liters of flow (~84% O2) for nearly two days, but the doctor ordered lasix to get rid of some of the fluid and now his flow is at about 3/8 liter (~33%) to 3/4 liter (~45%). He has slept well the last two days. He loves his tummy, as you can see, but only after he gets settled down. He is gaining great strength in his neck, and can keep it up for longer lengths of time.

He is still taking two bottles a day. One in the morning from the physical therapist and the second in the afternoon from us (or the nurse). We are still working on keeping his mouth closed while he sucks and that is more difficult than you would think. You have to make sure the bottle is properly aligned, that he is keeping his mouth sealed, he is breathing and swallowing adequately in between two or three sucks, and then that he is maintaining his oxygen saturation. Plus, Rhys gets super tired about half way through his feed and doesn't want to work for the rest of it. But, he's doing great with it and is taking all but a few cc's per feed.