Tuesday, March 31, 2009

Last Synagis of the season

Today Rhys had his last synagis shot of the season. Woohoo! One of these days we will cease to have multiple weekly doctor's appointments. Tomorrow is PT and Thursday is a new speech therapy at the hospital. I am hoping the ST will figure out a way to get Rhys to eat better and get him on track with the spoon feeding. Actually, he has been eating great for the last few weeks, but he hasn't gained (or lost) any weight since his surgery. Beyond annoying! He has definitely gotten longer though. Cody and I both can tell in how his pants fits and how far his legs hang down when he's in his swing or bouncer.

He is doing really well with telling us when he's hungry, and he acts hungry, but our problem is that the Y-cut nipples make him lazy. If we made his milk as thick as he likes it he can't get it out of the nipple because the hole is too small and he gets tired of eating before he has finished his bottle. If we make the milk thinner he gets lazy and doesn't suck properly and still doesn't eat enough. He eats the best when the Y-cut nipples are slightly "ripped and torn" where the hole is a little larger than it's supposed to be. But, that hole continues to get bigger so we eventually have to replace them and start from square one. Why is this so complicated??? We are also having a dietitian come out this weekend so hopefully she can give me some more ideas on how to pack in the calories. The cereal, powder formula and fruit obviously isn't doing it anymore.

We stopped by the NICU today before going to see the pedi and saw one of Rhys' primary nurses and doctor. This was one of the doctors we loved who did so much for Rhys. He said he looks amazing, said he had great head control and said Rhys' increased oxygen requirement after his surgery is "not bad at all" considering his history. That made me feel better. Since his surgery Rhys has needed .5 - .75 liters of O2, as compared to his .25 prior to surgery. I had been worried about it, even though we knew it would probably happen. I guess I wasn't expecting it to last this long. Once the hernias were repaired that pushed the intestines back into his chest cavity which increased the pressure on his diaphragm and gives his lungs less room to expand, thus he needs more oxygen to compensate for all these things given his chronic lung disease. We are three weeks post surgery and when we spot check his pulseox (we don't keep it on him all day since he went three months without one) he is showing no signs of allowing his oxygen to be bumped back down. What a bummer! I keep reminding myself that it could be so much worse.

Oh, you might have noticed that Cody added Twitter to the right hand side of the blog. I am not sure I am important enough to need Twitter, but regardless we now have it!

Monday, March 30, 2009

Mom and Dad are back from...

...vacation! Yes, that is right, Cody and I left our precious angel for a company sponsored weekend trip to Cozumel. It was rough (the weather was, literally) on the cruise ship and it was hard to leave our little man, but it was probably good for us to get a small break. It was quite amazing to experience a cruise ship as the parent of a micro-preemie. Ewe! Rotavirus/Norovirus anyone? We got home this morning, scrubbed up in the shower and found our little guy seemingly bigger, older and more mature. He is making different "talking" noises and his Nonna tells me he rolled from his back to tummy. I will not believe it until I see it for myself! :o) Anyway, here is a picture of Cody and I enjoying ourselves on our little break. Can't remember the last time we were able to do this. The whole while on vacation I kept thinking of the day we will get to take Rhys with us!
With little man before we left.

Today I am: 8 months and 2 weeks old
Adjusted I am: 4 months, 3 weeks and 1 day old

Wednesday, March 25, 2009

After all, it's a small world...

Today Rhys started his PT again after a FOUR week hiatus. His therapist said she was pleasantly surprised at his continued progress despite his ER trip and unplanned hernia repair. Sometimes these guys regress a bit with surgery, so she said she was very happy to see that Rhys has a self-motivation to do it on his own. He tracks people and toys much better than he did previously, he is on the verge of rolling over from back to tummy and he is much more interested in his toys than he has been. I personally think he's doing great! She did say though to try to get him to use his right hand more. I have noticed he uses his left hand a bit more than his right, but he uses his right hand frequently so I haven't been that worried about it. This is the first she's mentioned it so I am wondering if she just noticed that today or just chose to bring it up. When a child favors one side over the other it can be a sign of CP. Again, I have noticed he somewhat favors his left, but he has always used his right. I think part of it might be the way Cody and I hold him. We are both right handed so we hold him with our left arm to feed or play with him so his right side is more "confined". We both need to make it a point to keep from doing that to see if that helps him at all or if it is something else... or nothing at all.

In other news, Mr. Rhys is a popular little man. Since he's been home I have started using a little black day planner (that I have dubbed Rhys' Little Black Book) to keep track of all his "dates" - appointments, tests, sessions, therapies, etc. It has been the most handy thing I could ever have done. So, I think my phone rang a bazillion times today with people who want to see Rhys! The pedi's office called twice, the nutritionist, the home health people, the hospital speech therapist. Wow, I can't keep up! Good thing I have that little calendar or I'd be lost!

And lastly, for THE coolest thing ever that happened today... We are getting close to the end of March (end of RSV season), Rhys did great today at therapy, it was a gorgeous day, and Mom needed to get her hair cut after 5 yucky months without one. Soooo, Mom decided to treat herself and Rhys to a little outing. Rhys' Nonna (my mother) met me in town to pick him up and bring him back to the house so I could make my hair appointment, but first we decided to stop and grab lunch (GASP! I broke the rules). This little spot is a place near where I used to work and never had a crowd so I thought it would be ideal and we could keep Rhys isolated and away from lots of people. We grabbed a lone table in the corner and no one could sit around us. Score! We order and are waiting for our food when a lovely mom and her striking baby girl walk in. She is by herself - holding baby in one hand while trying to wrestle the highchair cover with the other. Rhys demands to be carried while I push the stroller single-handedly and I know this is almost impossible so I asked if she could use some help. She nicely accepts, hands me the baby, was immediately friendly and then apologized for staring at us. Hah, I hadn't noticed. :o) She then asks if I have a blog. Yes. Is that Rhys? Umm, yes. She tells me she has been reading his blog for quite some time. OMG, are you for real? You read Rhys' blog? Not only that but a few seconds later a very nice friend of hers walks in and introduces herself as a previously (personally) unknown to me blog reader who just so happened to post on my blog several times and also is the one who brought Baby Bella to my attention. Hello! What a small world. And to think, we almost ate across the street but the place was much too crowded for me to feel comfortable taking little man in. Where else does this happen? It was SOOO awesome! So to both you ladies, you totally made my day. It was a pleasure meeting you and Rhys talked non-stop on the way home of the beautiful Sarah. :o)

Monday, March 23, 2009

Rhys has discovered the excitement of...

...the TAG! Rhys was lying on the couch the other day and
I noticed he was smiling so big and almost laughing and just
staring at his Boppy pillow. Then I realized the fan was making
the huge tag move around. He was mesmerized by the tag and
the pillow itself. He has also been grabbing at the
little tags on his shake and crawl ball. I'm amazed. He has a few
of the Taggie brand toys but I hadn't brought
them out yet. People, why didn't we think of this??

Someone clearly did something he didn't like! It's wasn't Mom!

I didn't get pictures of it, but Rhys helped his dad in the flower beds yesterday. :o) We're clearing out the flower beds so Cody was cutting down some shrubs. It was a gorgeous 80 degrees outside so we brought Rhys' swing out after his nap and he just sat on the front porch and watched us for over 45 minutes. That was the first he's been outside for any length of time. It was nice for him I'm sure to see some new surroundings.

Sunday, March 22, 2009

What I remember of the day the boys were born...

This is a REALLY long post. I wrote this stuff down a while back so I would remember what I was thinking the day the boys were born and just came across it again. For those who have 45 minutes to read it I thought I'd share. Haha. :o)

Cody and I wanted our boys so badly. I remember driving to the doctor’s office to get my first ultrasound to check the babies when I was barely pregnant and thinking to myself that I was going to be so disappointed if there was only one. That sounds so horrible, and I don’t mean it that way… but I just KNEW there was more than one and if I’d been told differently I would have been sad. My pregnancy was perfect, no morning sickness, no complications, everything was great. My weight gain to me was a problem, but my doctor kept telling me “you’ve got two in there”. After the boys were born I saw an online graphic that said “those who don’t believe in love at first sight haven’t given birth to the love of their life”. My love at first sight started at my 12 week ultrasound. I was lucky and had countless ultrasounds my entire pregnancy, but that was the best one by far – it was a single shot with both boys beside each other, one head-up and the other head-down. I saw the boys go from tiny little blobs on the screen to perfectly formed babies with arms and legs and mouths and noses. Not many people are fortunate enough to say the same.

The morning the boys were born I woke up with cramping. Where did this come from? Even looking back I can not say there was any sign that in hindsight I should have noticed. The ONLY thing I remember is thinking baby A wasn’t kicking quite as much (he was in the birth canal), but it wasn’t anything alarming because he WAS moving. I was fine while lying in bed, but as soon as my feet hit the floor I felt it. I started to panic and was mentally praying that everything be fine. People experience cramping while they’re pregnant and it is totally fine. I called Cody and asked him what to do. I thought about calling the doctor instead of going to the office, but we’d had a previous issue with getting a return call (related to something else) so I figured I’d better just go in to get checked. I get there right when the office opened. I explained to the receptionist that I didn’t have an appointment, but I had been cramping and spotting since I woke up that morning. She got this confused look on her face and told me all the doctors were across the street doing procedures at the hospital so they couldn’t check me out, but the NP was in. Okay I told her, the NP needs to check me out. I go to sit down and keep staring at my watch. My cramping was getting worse, but I’d had worse period cramps in my life. They were pretty much 5 minutes apart and didn’t last very long, but they were getting to the point that I had to breathe a little to get through them. It felt like I sat there forever. Oh wait, I did sit there forever... for 45 minutes! I was almost to the point of going back to the receptionist and bang on her window to tell her someone needed to hurry when I was called back. The NP thought I was there for my glucose test (it was scheduled for the following day). Her eyes bugged out of her head when I told her what was wrong. She examined me and bolted out the door. I remember thinking to myself this can’t be good. I get dressed and open the door and there is a wheel chair waiting on me. I ask the NP what is wrong and she tells me there is a little too much something or other than she’d like to see so they are going to admit me. Yeah right. The hospital is across from the doctor’s office so they wheeled me over the sky walk. I asked the transport ladies what was wrong with me and they said the NP thought she saw one of the baby’s heads, but she hoped she was wrong. Oh geez. They commented on how calm I was. Mentally I was screaming “this can’t be happening!”, but I was numb from shock I think. I called Cody on the way over and told him I was being admitted. I don’t think he understood the significance of everything…. How could he really, I didn’t understand anything myself and I was the one pregnant.

I am wheeled into triage and they started admitting me and checking the babies’ heartbeats. Rhys was baby A and down near my cervix. No problems locating his heartbeat. Bentley was baby B and up on top and it took them several minutes to locate his. At the time I wasn’t aware that Rhys was Rhys, or Bentley was Bentley. We knew baby A and baby B, but we had no names picked out yet. It’s funny how everything makes more sense after the fact. Another doctor in my OB’s practice examined me and I have to say it wasn’t exactly comfortable. I was 10cm dilated. At that point I was outwardly calm but seriously about to lose it. Cody gets there. They start the IV in my arm. I hate needles. The neonatal team comes in and tells us that based on gender, gestation, race, etc., the chance of survival is about 5%. If they are able they will intubate, but it is very iffy and they won’t force it. Based on those statistics she says they recommend a vaginal birth because it is basically unnecessary to cut for a c-section. A little positive, ANY positive, would have been welcome. A second doctor in my OB’s practice comes in (my OB was delivering another baby I think) and asks me how I want to deliver. I think to myself anyone is crazy if they think I can push one baby out, lose it and have to deliver another. I told him this in a nicer fashion. I remember the look on his face, so filled with compassion. He touched my arm and said, c-section it is. Right now? I said. I knew this was serious, but I don’t think my body was allowing everything to register. I broke down with gulping sobs at that point. They start to wheel me down to the operating room while people are asking questions and filling out forms. It was like something you see on TV. They roll my bed up next to the operating table and I scoot over. Surreal is the only way I know to describe this. I am getting a catheter, being swabbed down with iodine, having anesthesiologists assess me and watching countless other people run around all at the same time. They put a mask over my face and I’m out.

I wake up with a burning pain low on my belly and I am shaking uncontrollably. I look up at Cody and he puts a piece of paper in my line of sight. There are four tiny footprints. I immediately start to cry because I think they didn’t make it. He has a teary smile on his face as he tells me they were able to intubate them both and they are up stairs in the NICU. My shaking is controlled and my pains meds hooked up and I get wheeled to my room. I remember very little else about that day. I think Cody has told me several things several times, but I vaguely remember. Apparently morphine makes me loopy.

I do remember our conversation about naming the boys though. Cody and I had tossed around lots of names since we found out what we were having. We hadn’t decided on anything and refused to name the babies without seeing them. We joked that our babies were coming home without names because we couldn’t decide on anything we both liked. Our idea was to pick out several top contenders and then choose them once the boys were born. Cody went to see the boys a few times that day and I think they must have asked him every time if the babies had names. At the time the boys were born our top contenders were Rhys (a legitimate Welsh spelling of Reese which we both loved but have now discovered no one knows how to pronounce) and Bentley (a new pick we’d only recently thrown into the mix). Cody had seen the boys and I hadn’t so I asked him to pick who got which name. I also remember the conversation when he called upstairs to tell the nurses the good news! After living in the NICU for 5.5 months I never saw an unnamed baby so I think we were somewhat of an anomaly.

Everyone leaves that night and Cody and I are sitting in bed when someone knocks and opens the door. It was close to midnight. The room was very dark and I remember the light from the nurses’ station spilling onto the floor and seeing the NICU NP’s shadow cast on the floor. Bentley wasn’t doing well so we should come visit she said. I had not gotten out of bed at that point and was not able to use a wheelchair. While we were talking she got a call from the head neonatal doctor (who we now know very well) telling her Bentley was rapidly declining. They rush to get help and take my bed upstairs. I hadn’t seen the boys before and I was almost scared to look. A 24 week preemie looks completely different from a term baby. I couldn't understand how they were so small and still breathing. I had no idea what the numbers on the screen were or what they meant, but buzzers and alarms were dinging. They take Bentley out of his isolette and remove his tubes. It all happened so fast. I was still seriously out of it from the morphine so I was almost detached from the whole thing. I am holding Bentley and we wheel over to Rhys’ pod. We get one picture of all four of us. I so wish I knew then what I know now. I wish I would have seen Bentley prior to him taking his last breath. I did not understand. It isn’t my fault, but I will forever hold that regret in my heart. I think that is probably what prompted us to spend every day with Rhys even though we were doing nothing other than sitting by his beside for weeks on end, unable to do anything for him except be there for him when he was so small.

After about four months I finally started to feel like a mother. It is hard to think of yourself that way when you’re only child does not reside in your home. I consider myself a realist. Sometimes it might seem pessimistic, but I try to not allow myself to read too much into something that is just average. We were always cautiously optimistic about Rhys and his prognosis, but it took about 4 months before we really allowed ourselves to really think about WHEN he comes home, as though it’s a definite. I think that was our way of dealing with possibility that it might not happen.

You’d never wish this experience on anyone, and it is equally hard for all parents who endure it. But, if it’s at all possible for one case to be worse than another I think it is especially traumatizing when it happens with your first pregnancy. You have nothing to compare to and this is all you know. You don’t get to experience the baby showers or bring home the baby after delivery. We’ve had countless people comment that they don’t know how we did it. I don’t either, but what choice did we have? How else were we to act? It’s as horrible as you can imagine it to be. No, actually it’s worse. But, you make do with the cards you’re dealt and make the best (however that’s possible) of a horrendous situation. Many people have told us God doesn’t give you more than you can handle. That may be true. Although that statement is surely meant to be comforting, the person saying that doesn’t have to deal with the situation and try as I may I could never keep myself from getting cynical. I’m sure I’ve told someone that at one point or another, but after this experience I will never say it again.

I’m usually the person who likes to know everything about everything. Cody calls me Questions. All we’ve been through has afforded me a new understanding of the miracle of the human body. On the flipside you also have a multitude of potential complications and conditions highlighted that you never knew existed. When I was pregnant I wasn’t sure I would do it again. I was so miserable by the time the boys were born I was beyond ready to reach my target of 36 weeks. I had gained 40 pounds, but felt like I’d gained three times that much and my joints and back didn’t appreciate the extra weight. Now I’d have a dozen more. People seem surprised to hear that. Bentley’s infection was an unfortunate thing, and God willing the next pregnancy will be perfect and boring through the whole thing. I was lumped into the high risk category because of the multiples, but now I will reeeeally be high risk. I will be a freak about everything, but I will not let that prevent us from having more children. In this, I wish I didn’t know so much about everything. Because one thing I have come to realize is that ignorance is sometimes bliss my friends.

Friday, March 20, 2009

Pedi visit

I think the pedi expected Rhys to be showing rib bones from the way Cody and I express our concern over his unwillingness to eat. She is great though, dubbing him a "punk preemie" (which I thought was funny), and is sympathetic to our concerns. She said his weight is awesome at 12lbs 2.5oz, and if you plot it on the growth curve it has shot upward significantly, vs. the slow right hand slope, as compared to the first time she saw us. She checked him out and said he looked great so that made me happy that I wasn't accidentally missing some sign that Rhys was getting sick or something else was wrong.

Turns out that there was a misunderstanding and we shouldn't need a second swallow study unless they missed something important with the first one. Rhys has had plenty of radiation in his sort life so we don't want to add to it if unnecessary (and fry his thyroid and man parts... I added that last bit, it seems I am always concerned about his man parts). She wants us to see the speech therapist at the hospital for help with eating. I really do think this will be useful with spoon feeding and eating solids, but Rhys really can and does take his bottle well when he wants to. He is not an on-demand eater and pitches a huge fit if he is finished and you try to make him eat more. He ate well last night and all day today, even having the nerve to throw a big fit when his bottle wasn't ready fast enough for his liking. He is trying to be a big boy and sleep through most of the night and only take 4-5 bottles a day, but he just doesn't take the volume he needs to make this a total success. We're working on it. I've heard it from a million people that all kids have days where they won't eat, but if you're not a mother of a preemie it's hard to understand that it is totally different. If my child was 4 months old and weighed 16 pounds I wouldn't give a fig if they missed a bottle, but when you fight really hard to get the pounds on you don't want to watch your hard work melt away a few ounces a time. Anywho, all was good today and hopefully his bottle strike was short-lived and we'll be good for another few weeks until he stages another protest!

Today I am: 8 months and 4 days old
Adjusted I am: 4 months, 1 week and 5 days old

Thursday, March 19, 2009

Food strike... how many times does this make?

Rhys has decided (yet again!) that he doesn't want to eat. It seems to be a little bit different than before because we have a bottle he eats well with, we have his "recipe" of what he likes in his milk and how thick he likes it, but all of a sudden he is now able to push the bottle away and he just isn't having any part of it. This is day three, though today has been far worse than the previous two days. We have tried everything we can think of... thinner milk, different nipples, bananas or applesauce in his bottle, no cereal, more cereal. None of it works. It just doesn't make sense to me. He is totally capable of eating, he knows how, but he just doesn't. We even thought maybe he was starting the dreaded teething process because he has a lot of saliva, constantly chews his hands, hasn't slept well the last few nights and has been coughing (increased saliva can cause this), but his gums aren't swollen and everything else seems normal. Maybe teething DOES have something to do with it, but he eats below the norm as it is, so we can't have an eating strike. *sigh* We are going to the pedi again tomorrow. I hope she doesn't want to admit him for being dehydrated or anything. I don't think he's dehydrated. He doesn't ACT dehydrated. She wants us to go to speech therapy at the hospital and have another dang swallow study done. Why do we need a second swallow study? I'm fine with speech therapy but we've actually been to speech therapy and it wasn't very useful in my opinion. So, here we go again. It seems I am destined to chase this poor child with food begging him to eat for the first few years of his life.

Oh, we had our post-op consult yesterday and everything looks great. He told Rhys (a.k.a. "Superstar") that he didn't want to see him back again ever and he needed to stay away from the surgeons. Sort of funny, but the resident (who we'd never seen before) that came in to take a look before the doctor came in was just certain that Rhys had prior hernia repairs. Umm, no. I think I'd know this. He referred back to his chart (which he swore said as much) and then pointed to Rhys' incisions. On one side the steri-strips had come loose and some how stuck themselves perfectly parallel to the actual incision, only slightly higher. There was a little dried blood on the strips so you couldn't see underneath. The gauze had only fallen off that morning so that was really the first I'd looked at it. The resident really was perplexed and couldn't offer an explanation to why there would be two incisions on the same side. He went out of the room and apparently mentioned it to the surgeon because the first thing the surgeon did was remove the steri-strips to reveal nothing beneath. I thought it was kind of funny and I know the guy felt like a moron. Nothing like on the job training. :o) Thus the reason I wanted the actual surgeon and none of the "and associates" performing the procedure!

Monday, March 16, 2009

Happy 8 Months!

My little chub is 8 months old today. I say this every month, but WOW! He doesn't even know he had surgery, which I am thankful for. He is moving as much as ever and has continued to do his self "stretching" like he always has. His eating is back to his norm, whatever that is, but I swear I still don't know how he gains weight with the amount he eats. He weighed 12lb 3.5oz last night before his bath. That is 4 pounds more than when he was discharged from the NICU 2.5 months ago. I guess I can't complain about that, even though I know several term babies born after him that have already passed him up.

He was lying in his play gym today and was so close to rolling from his back to stomach. He made it to his side with no problem and then his arm got in the way of him going all the way to his tummy. I find this amazing since he's basically had little to no tummy time in the last two weeks. We still need to work on him raising himself up, but I have vowed to start his home therapy again today so his PT will be pleasantly surprised next week when we go back. Other than that I swear he smiled when playing with his toys the other day. He has a shake and crawl ball that he likes and he loves his hedgehog. I didn't get an out right laugh, but he had his lopsided smile when I brought them out for him to play with. He has also discovered he likes putting weight on his legs. If you hold him up and put his feet to a flat surface he loves to sort of bounce and stand. He is a crazy boy.

As promised, pictures from the hernia surgery...

Bright and early - 7 a.m. and ready to go!

One size fits all was a little too big for little man.

I was a grump and looked so pathetic. Mom felt really bad for me.

That's NOT what I wanted!

Adjusted I am: 4 months, 1 week and 1 day old

Thursday, March 12, 2009

Surgery Smurgery

Surgery, what surgery??
I'd say Rhys is acting about 90%, and I only say that because his sleep patterns are still off a bit from the meds and he isn't eating quite as well as he normally does. But he's oh so close. I've given him tiny doses of his codeine today just to make sure he is pain free, but he hasn't acted in a way that makes me think he's hurting. He ate great this morning, but this afternoon he has been too interested in the TV and he's played with his bottle. He tries to be a big boy and help me out with the bottle, but his little hands tend to get in the way.

Overall I am truly amazed at how much he is moving around and how little he acts like he has a cut up man part and two incisions on his lower abdomen. The surgeons cut the gauze covering his hernia incisions in the shape of tiny hearts (it is really cute you can tell they did it free hand) and that is the way they refer to his incisions. His "hearts" have a bit of dried blood on one side that wasn't there yesterday, but it is a very small amount and I am thinking it is from him moving around so much. I have tried to keep him still as much as possible but there is only so much I can do. Beneath the hearts are steri-strips, which I had with my c-section, that will fall off when they're ready. The hernia incisions aren't raw and dirty like the circumcision and they're covered so I haven't seen them yet. His circumcision is healing very well and the medicated salve they gave me seems to be doing the trick because it is still healing very nicely and doesn't seem to bother him that I can tell. We have a follow up next week so hopefully everything will still look great and we can get little man back into his PT!

I am still waiting on Cody to get the surgery day pictures off his cell phone so I will post them whenever I get them.

Wednesday, March 11, 2009

5 am update

Well, its 5 am and Rhys has started to wake up. He slept off and on from 9:00 until 4:00. He still doesn't want to eat and he just got some more Tylenol with codeine at 4:30. Hopefully that will help him sleep. We should be getting out of here this morning sometime.

10 a.m. - We're home! I woke up early this morning, stopped and grabbed Cody some breakfast and headed to the hospital with the rest of the almost rush hour traffic. I got to the hospital around 7:30 just as the doctor popped in. Rhys looks great, he is acting like himself again and gaining his appetite back. He ate 3.5 ounces for me this morning while Cody ate breakfast. The doctor signed the papers and out the door we went! I just gave Rhys a wipe down, some clean clothes, a fresh diaper and he is perfectly happy! We got a prescription for Tylenol with codeine so hopefully that will get him through the next day or two and then he'll be good. He is moving quite well for someone who just had surgery. I haven't heard him fuss this morning in pain so I am thankful. His little circumcision looks 100% better today even than it did yesterday so I am hoping the quick recovery continues. Thank you all for your thoughts and prayers. I will post our pictures later this afternoon.

9:45 p.m. - Rhys has eaten fairly well today considering it is the day after surgery. His pain meds are working wonderfully and he has slept most of the day. Part of me hates that the meds are making him so drowsy, but on the other hand I think that is better for his healing. Per the doctor, I am going to stick with the codeine as prescribed through at least tomorrow and see how he feels. I don't want to keep him doped for days if he doesn't need it, but don't want him in pain either. He went 8 hours today without indicating he was hurting and that is already 1000% better than yesterday. His man parts are a little swollen and frankly look a little beat up, but I notice an improvement every time I change his diaper. Hopefully he will continue to sleep well tonight so Cody and I can get some rest!

Tuesday, March 10, 2009


Today is Rhys' surgery for his hernias and circumcision. Please keep little man in your prayers this morning.

9 a.m. update - The pediatric surgeon just came out and said Rhys did great. They are going to let him wake up and "try" to extubate (I say try b/c with kiddos on O2 they sometimes can't right away). We are waiting to get back to the recovery room. His poor little penis. Mom is so worried about his man parts hurting him.

10:30 a.m. - Rhys is awake and doing well. He is understandably cranky and hungry. We are in recovery waiting on a room. He is extubated and on 1.5 liters of O2. He is starting to fuss quite a bit but we're not sure if he is in pain or what. Stay tuned.

1:30 p.m. - Finally in our room. Sheesh. Little man is not happy. He finally went to sleep, but isn't interested in eating. I don't think I'd eat if I had someone mess with my man parts either. Sweet baby. I think it's only making it worse that he isn't at home and is out of his element. Hopefully his discomfort wont last long b/c Mom is about to go nutty!

4 p.m. - Okay, Mom is ready to get the heck out of Dodge! I think Rhys would be infinitely more comfortable if he were in his own home. He has been on 1 liter of flow since we moved to the room and he is satting well. Still not the 1/4 - 1/2 liter we are on at home, but the increased support is expected and he isn't on the vent! His little man parts look like they really hurt. He had morphine in the OR, but has only had Tylenol since. Is Tylenol really adequate for pain? Tylenol doesn't even get rid of my headache so how is it supposed to manage the pain of having your penis cut and hernias repaired? I have my doubts.

8 p.m. - Cody is staying the night because I couldn't watch my baby whine with pain. Poor little man was not comfortable and the REGULAR Tylenol every SIX (yes, SIX) hours wasn't cutting it. We had the doctor paged and she tweaked his meds so hopefully that will help. Other than that Rhys doesn't have much of an appetite, but is doing well and starting to act like himself. I think he will be great in no time if they can get the pain under control. We should be out of the hospital first thing in the morning. We saw so many of Rhys' previous doctors and nurses today and even had a few people pop into the room to say hello. Here is where that Mr. Popular comes into play... :o) The whole NICU knew he was having surgery.

Today I am: 7 months, 3 weeks and 1 day old
Adjusted I am: 4 months and 2 days old

Wednesday, March 4, 2009

We only wish it had been a 24 hour bug

The fact that Rhys was throwing up and showing no other symptoms of being sick was bothering me because it didn't make sense. We continued watching him for signs of anything that might explain things, but he did great through Monday afternoon and yesterday morning. By yesterday afternoon he was crying pretty much the whole time he wasn't asleep. While my baby boy is a bit whiney at times, it is usually for attention and he quiets immediately after being picked up. That wasn't what had been going on for the last few days, there was no consoling him or making him comfortable. Cody and I bathed him yesterday afternoon to try to calm him down, and that worked until we started soaping him up and checked his hernias. Immediate screams, and they weren't "pliable" like they should be, but about the size of a golf ball and rock hard. *Ding, ding, ding* I had briefly thought yesterday that it could be his hernias, but then dismissed it because every time we've brought it up to the doctor they always say they are fine. Well, again we didn't think this was fine, so we thought worst case we'd be the crazy parents who overreact.

Cody called the pedi and we waited for two and a half super long hours with an inconsolable child for a call-back. But, it wasn't the pedi that called us back it was the pediatric surgeon who works with the NICU babies. This doctor is familiar with Rhys from his PDA consult as well as his hernias. She told Cody it couldn't wait through the night and told us to take him to the ER. While I expected this to be the recommendation I expected it from the pedi, as in if you are worried about it bring him in to get checked since it's after hours. I didn't expect it from the surgeon who actually operates on these guys. So, we packed up little man and headed to the ER.

Why is it called the emergency room when there is very little urgency to be had? I guess if it were life threatening they might be motivated, but everything at a hospital works on its own time table. We shared an exam/triage room (separated by a curtain) with a kid who had the flu as well as two others who had viruses and were hacking up lungs. Nice. Not only that, but every one who walked in felt the need to touch Rhys. Yes he is cute, but the cannula should send off a red flag that he has lung issues and can't get sick so keep your hands off! Rhys got an IV, a heavy dose of morphine and conscious sedation. When the nurses were done I nicely asked for alcohol swabs and cleaned him off (somehow the ones I bought never made it to my purse). So EIGHT hours later we had been seen by every ER doctor plus the on-call pediatric surgeon as well as his boss who had been called in from a sound sleep at 4am. Rhys was blissfully unaware of what happened, he was zonked out the whole time. They did an ultrasound to make sure his hernias weren't strangulated and found all was okay with proper circulation to his man parts and intestine. Until 4:30am this morning Cody and I were prepared to be admitted and have surgery this morning.

*sigh* I told Cody this is not when I had planned to get it done! But, we had no surgery today. When we left the ER this morning I felt filthy and kept covering Rhys' hands to keep him from putting them in his mouth (he hadn't eaten in 10 hours). As we were loading the car I was putting something in the trunk and peeked through rear window and about died when I saw his IV hand going into his mouth. Ick! As soon as we got home I swabbed him down with alcohol wipes and we went to bed, I was too tired to bathe him until this morning. Bless Rhys for sleeping and letting Mom and Dad get a little rest. He has been such a good boy through this all. We woke up, scrubbed down Rhys and went for our regularly scheduled consultation with the surgeon. What is it with things happening the day before a scheduled appointment? The boys were born the day before my 24 week check-ups and Rhys needed medical attention the day before his hernia check-up that was scheduled 10 weeks ago! I told Cody we need to buy a lottery ticket. What are the odds? Anyway, the one good thing in all of this is that most of these doctors know Rhys from the NICU and know at least a little of his story. I am finding that helpful with all these follow-ups. This incident has forced us to move up the hernia surgery to next week. In an ideal world they would have liked him off O2, but now things can not wait. The concern with surgery now is that Rhys might need vent support for a bit. While I do not want this to happen at all, I am okay with a day or two if need be, we did it for 3 months, so this will be a piece of cake! All things are relative. He has one of the best surgeons around performing the surgery, so I am confident everything will go well with the hernia repair and circumcision. Poor little man, ouch! These pics were taken with Cody's cell phone so they aren't great, but you get the idea.
Totally out of it!

Starting to wake up...

Wide awake just in time for Mom and Dad to take
me home! He kept swatting at the arm board trying
to get it off. It was pretty funny.

Tuesday, March 3, 2009

Grabbing toys

If you look closely you can see Rhys grabbing (and holding) onto his play gym friends. At one point he grabbed the monkey, which he loves, and pulled it clear off its perch. So, he is now officially grabbing for larger toys, play gym toys and spoons! It is strange, but it almost seems like he has to be in the right environment for him to reach and grab for things, he definitely doesn't do it on demand.

We had a slight scare yesterday morning - I thought Rhys was getting sick. About 9pm on Sunday night Rhys starting screaming. This was the red-faced wailing with nothing that could console him. He screamed for about two hours straight, we finally got him to sleep and he woke up again around midnight. He slept on my chest for 2 hours, woke up, threw up, went back to sleep, woke up, threw up and thus continued my morning. I was convinced after the early a.m. vomiting that I had poisoned my boy with bananas, but I do not think that was it because he couldn't keep anything on his stomach until 5pm and he only had about 3-4 baby spoons full of bananas to begin with. He wasn't acting funny (except he was super exhausted from not sleeping well the night before), no fever, no nasty dirty diapers, breathing was fine. I couldn't figure it out. The pedi said to give him pedialyte and bring him in if he threw up his 5pm feed yesterday afternoon, but he has been fine since. Not sure if it had to do with his Synagis shot, was a 24 hour bug or what. I'm still watching him, but hopefully that was the extent of it. It is easy to get lax with the constant screening of guests, hand washing and purell when your child stays well, but this was a little reminder of why we do it.

I just got in a billing summary for Rhys' entire stay in the NICU. Let's just say that he has something in common with the movie title Million Dollar Baby. Later when we tell him he looks like a million bucks I have proof that we mean it in more than one way. :o)

Today I am: 7 months, 2 weeks and 1 day old
Adjusted I am: 3 months, 3 weeks and 2 days old

Sunday, March 1, 2009

Happy March

My bumbo chair. If Mom isn't careful I will
arch right out of the back of it.

Chillin' in my bouncer. I don't always like it, but it's
not too bad when I'm watching TV.

Lil' Slugger

Not much new with Rhys. We got his Synagis shot on Friday. He usually quits crying as soon as the needle comes out, but this time it took him an extra minute to two. Poor little man. His head control is getting better by the day, he gnaws on his hands 24/7, but he still doesn't like his little toys that he could chew on. He does however, show interest in his larger toys that he isn't able to pick up on his own. I have noticed a lot of saliva in his mouth the last day or two, which makes me wonder about a possible tooth. I have also noticed, and several people have asked about, what looks like a tooth coming in on the bottle. It has been this way for weeks and it doesn't feel like there is a tooth there, but maybe it's on its way. He hasn't started drooling yet, but he has lots of bubbles. He is still sleeping in his pack-and-play and doing fairly well. He sleeps about the same amount of time he did when he slept with us, but he does seem to take better naps. His eating is slightly improved, but I am forever wondering how the boy gains weight with the volume he takes in. I think the only reason he gains any at all is because of the cereal we've been putting in his bottles. We have a surgery consult this week for his hernias so we will see the doctor says. Part of me wants to get it over with ASAP, but the other part wants to wait a while. I don't really fear him "relapsing" and needing continued breathing support, but him being on the vent for any length of time is too long for me!!

Today I am: 7 months, 1 week and 6 days old
Adjusted I am: 3 months and 3 weeks old

This is from Rhys' puree exploration tonight. The therapist suggested to only use the spoon to encourage him to work his tongue and lips. And, to make as much mess as possible in an attempt to get around any potential aversion to having things on his face and body. As you can see, Rhys enjoyed his bananas. The little monkey won't grab for his toys, but he sure as heck had no problems grabbing the spoon!