Breaking News!!!

This just in- Liam gets to have his first bottle (10ccs every 3 hrs) at 11a!!! More on this breaking development at 10 (PM!).

...

And we're back with today's top story: Liam Ripp gets to eat for the first time. After 18 excruciating days of waiting for clearance from surgery, the good news finally came today during morning rounds. We go now to his mother to get her reaction.

"Well I was just sitting there holding Liam like I always do that time of the morning, when the surgery team came in to do their rounds. They did their once-over to see how he's been healing, and then out of now where the doctor says let's try him on some ccs and see how he goes. I was like- today? And he was like- during the next visitation. And I was like- oh my gosh I can't believe it! I was so happy. And then I texted everyone I knew."

(Chuckle) Well that is certainly one relieved mother. And a relieved baby too I'm sure! We now have an update to that report about how the rest of his day went.

We're told that Liam took his first bottle like a champ. The bottle contained 10 ccs that his mother had been pumping and saving. He took his time with the bottle, slowly working his way through the process. He experienced no reflux, much to his mother's excitement. After getting his first feed, he settled into a light nap with just a few little outbursts as he got used to his digestive system getting fully utilized for the first time.

His second feeding at 2pm went just as well and he had a content afternoon reading stories with his mom. His Nana and Poppa came by the NICU for a visit and got to partake in the early evening feed.

And we're told, just moments ago, Liam finished his night feed in record time- less than 2 minutes! Now there's a hungry fella. He got some bonding time in with his dad before it was time for them to leave the NICU for the night. And now begins the watching, and waiting, for the first dirty diaper to emerge now that feedings have started. Will it happen overnight while the nation sleeps? Or will he save it for his mother in the morning? Only Liam knows and he's not talking. So tune in next time for the results of this fascinating event.


PS- Also got RiBear back today. I LOVE every other Mondays when my (big) boy comes running at me with the biggest smile and a hug for me. He made sure to stop me as we were leaving the hospital to hug me again and say Happy Valentine's Day. We got to play and chat and just love on each other. It's so great having Ri back with us. :)

Weeked Wrap Up

This weekend has really drained me. I think I felt better getting it all out while Steven was here so I had someone to share the emotions with rather throwing a pity party for one. That way I can face the week with all of it out of me and I can feel like I'm starting fresh. Today was a decent start to the week...

Liam went over 24 hours with clear fluid coming up in his tube from his stomach which indicates his digestive system is processing his secretions properly so it's probably working better now. I think the surgeon wants to see some consecutive days of this before she'll grant feedings, so we hope he keeps going through the night and has more good results by morning. A step forward was they toook him off suction. What this means is that the tube is no longer sucking the fluid from his stomach, they are letting gravity take over to see if something comes up on it's own. Can't recall how this is better then suction, but I just know that it is a step closer to getting his NG tube out.

I think we've all given up on the dirty diapers. I don't even think he got a suppository today. And he's still fussy as all get out. Trying to put his hands in his mouth, trying to eat his blanket- he's so hungry. We found letting him lay up on our chests allowed him to get some sleep at least (and take his mind off the tummy pangs). At least Liam is thriving on the fluids and lipids he's getting. He's closing in on the 7 lb mark and has grown half an inch so far.

On a sad side note- another baby passed away this morning in NICU. This time it was an 8 month old- EIGHT MONTHS OLD and never was well enough to leave the NICU. The family had been here at the RMH longer than my girlfriend was. There is a silver lining to the story. Without going into it too much- the family functions as a stronger unit than they were able to before they had this baby. Sometimes we never know the reason why we go down the roads we do, until we get to our destination. As emotional as the past few days have been, I'm constantly reminded that my baby has great odds and I need to remain thankful that all I have to worry about is when Liam's going to get to eat, not how are the doctors going to try to keep him alive. I remind myself it's still ok to be upset about my baby's situation and my family's coping, but I'm greatful all the same.

Steve and I spent on of our breaks pimping out Liam's digs with a new iPod Shuffle w speaker so he'd have his music we play him when we're up there (Renee & Jeremy I spoke of before). Anything to keep him comforted! We also had to pick up some Valentine's Day goodies for Riley since we get him back tomorrow- hooray! Steve and I took in one more movie during the afternoon break- The King's Speech (super great- a must see!). It was good having quality time with my husband, away from the hospital and house before he left again for the week.

I went back up in the evening to see Liam while Steve headed home. Liam was wrapped up like a little glow worm- all curled up on my chest. It was hard to leave him behind for the night, but I love our weekend night nurse so I'm sleeping better knowing she's on watch. I asked her if she could be our "primary" which means could she try to get scheduled with us whenever she's on duty. I love consistency, especially with nurses you feel confident with and with whom your baby responds to (that was a lot of "withs" but who has time for sentence structure at 11pm?). Liam seemed to have very peaceful nights with her around so I was thrilled she said she would take us on. Now we just need some good weekday night nurses and we're set.

I got back to the room tonight, alone, but my husband had left behind a gorgeous bouquet of roses for me since my other ones have now died. It's a nice reminder of his support, even though he can't be here with me during the week.

A Break From Routine

Short blog today-

It was great having Steve with me in Pensacola the entire day. It was a very social day for me which was a welcomed break from spending hours every day in NICU. Part of me felt bad for not spending as much time as I usually do with my baby, but I think a change in pace might be good to refresh my mommy batteries.

I got a quick visit in with Liam this morning before scooting off to breakfast with my girlfriend Ilka. Liam had a very restful night (thank goodness), but no progress. Still lots of green gastric juice, no dirty diapers. Steve stayed behind and caught up on some boy bonding while Ilka and I went to catch up on girl time. (By the way, Steve changed his first diaper today and did a fabulous job! It's pretty hard with all of his wires and tubes so I was impressed.)

It was great talking with someone from the outside about stuff other than just the hospital. I also loooved seeing her baby girl (I can't get over how quickly babies grow up!) so it was a nice pick-me-up to start the day.

I went back to the hospital for another quick visit before going out with my mommy friends who also drove over from Alabama today! Had a fabulous lunch with Laurie, Chasity, and Stephanie, catching up on what all has been going on while I've been gone. Everyone got a tour of the Ronald McDonald House today. I liked showing it off- it's so gorgeous here! My home away from home.

Steve said Liam was great all morning and he continued to have a decent afternoon too. Mommy finally got her cuddle time with Liam and one of his favorite nurses, Nicole, totally pimped out his room. She got him a fluffy new blanket for his bed that looked like sand, she found a surf onsie and rustled up a fish mobile to hang over Liam's crib. We had been talking about the theme of his room at home so she wanted him all decked out in NICU. She also found a swing to try him out in when he was awake just for a change of position. He stayed asleep most of the afternoon so I didn't get to see him try out his new toy.

Steve and I snuck away for a movie date for us to enjoy some time together. RMH has worked out a deal with Rave movies where we got free movie passes, popcorn, and soda. What an amazing donation! It was great to take time out for ourselves. We ate out a quick dinner before reporting back for night duty in NICU. Liam was back to being fussy again, but his fluid was much more clear! Steve tried to soothe him as best he could, but Liam was having fitful sleep again. He seemed to settle into his crib well when we left, so we hope he gets some much-needed rest (and that his fluid stays looking good).

To Put it Bluntly- Today Kinda Sucked

Just when we were making progress again. Just when his gastric output was finally turning to the light yellow we've been looking for. Just when he was starting to have dirty diapers. Just when I got to thinking we were just days away from getting to feed Liam...

We're back to square one again. Lots of green came up overnight. No dirty diaper today despite the suppository. And he was super fussy. Poor baby couldn't get comfortable- he'd fuss and strain and sleep in short sessions throughout the day. He completely pulled out his NG tube once today (back down the hatch it went!) and had a second attempt to break free, but just managed to rip a huge adhesive patch off the side of his face (which he instantly regretted).

I hummed songs, read stories, tried all of his favorite things to settle him but if it even worked, it was only fleeting. Reinforcements arrived today for the weekend- yay for hubby! It's comforting to have him here at the House again even if he can't do anything to make Liam better.

A bright spot in the day was when surgery did their rounds and peeled off the last of his surgical tape. It was awesome to see how his belly turned out and how well it healed! Now we just wait for the cord to fall off and see how his belly button ended up. It looks like it might be bigger then a regular one, or have a lip around the edge where they brought together his closure in a "purse string" fashion. Guess we'll have to wait a little longer for the big reveal.

Liam had a much more peaceful evening than his day had been. Steve seems to think I exaggerated the day (teasing). The baby is an angel whenever his daddy's around. Or he's just exhausted from all the carrying on he did today. All of his vitals were fine going into the evening. We gave him his sponge bath, got him in fresh jammies, and read a bedtime story before he snuggled in for a cuddle with daddy.

I hope he gets lots of rest overnight and has a much better day tomorrow. It's hard to watch a miserable baby...

Party at My Crib!

Liam got moved to a big boy crib today! It was such a sweet surprise when I came in for visitation this morning. He's looking more like a baby every day- clothes, now in a crib. It's funny how little things like that can make such a big difference- it can make you feel like you're making progress to getting your baby home.

And Liam loooooves his new digs. He has a better view of the room around him now since the top is completely open- he spent a long time just looking around checking out everything that was different. He also has a cushier mattress too, so he settled into a long nap for pretty much the rest of the day- he was in heaven!

The morning was pretty uneventful except for during the break when I was in the cafeteria grabbing a snack. A Code Pink got called over the public address system- which means a baby is unaccounted for. They provide the description of the baby and the blanket and ask that all doors are secured. Immediately the hospital was in lockdown. Employees that travel the corridors stopped at the nearest exit doors and took post. A guy was even looking into trash cans and in bathrooms. After what seemed like forever they finally called the all-clear. It's nice to know my baby is tucked away in a secure NICU (and he's tethered to all kinds of tubes and wires- kinda hard to take off with a NICU baby!). I asked our nurse later if it was just a drill or if a baby really was missing. She said usually what happens is a dad will forget where they are and are not allowed to go with a nursery baby and then the nurse reports the baby missing. Those poor dads!

Liam's stats for today- 6 lbs 11 oz (which is up and I'm surprised after how much came out in his dirty diaper yesterday). He had another suppository today but managed to squeeze it back out twice. The second time had some substance with it, so the nurse counted it as a dirty diaper so we can try to move right along to feedings. Still no word on when that is exactly. The fluid coming out of his tube today was definitely more clear and less plentiful. Still on track!

I attended my first House meeting where they go over some events coming up, courtesy reminders, and information about the house and services we're enjoying. Today they told us little background stories about the different donors that have sponsored rooms or areas of the house. Some rooms are sponsored by employees of companies, other by trusts and foundations, and some even by families that have used the RMH services. A big misconception is that the Ronald McDonald Houses are funded by the McDonald's Corporation- but they are not. It takes nearly $710,000 to run the house annually and it all comes from public and private donors. They suggest families make a $10 per night donation if they are able, but no one is turned away if they cannot pay (this is where the Share-A-Room sponsorship comes into play- people can pay for a family's stay). Three hundred dollars pays for a family to stay at the house for an entire month. Not much to ask when it actually takes $2,000a month each to run the rooms, the difference is made up by donors. Steve and I keep discussing different ideas about how we can give back to the house- there's so much to choose from at all different monetary levels which makes giving easy for any kind of budget.

Riley was away at his other house for the rest of the week (which is always hard to see him go) but on the bright side, I got to spend some extra afternoon hours just holding Liam, singing him songs and reading to him. He fell asleep but I won't take that personally. :)

Steve came over after work again and we went up together for the night visit. He loved getting to see the new crib and even assisted on changing the evening diaper. I think he would be more brave about changing diapers, but Liam has now shot at me twice and I think Steve would rather I stay in the line of fire for now. He got a great cuddle in with Liam before returning him to his crib for the night. We left Liam with his own crib soother from our house (now that he's in a real crib!). It's an under-sea theme with fish that swim by and it plays either music or water sounds. Since he loved looking around and at the iPhone when I showed him pictures, I thought he might like something interesting to look at when we weren't there. It would also be something familiar that will come home with him that might make the transition from NICU to his room a little easier.

But let's not get ahead of ourselves...

Houston... We Have Poop!

It all started off like any other day. Mommy running late to visitation because she was enjoying her Tempurpedic mattress, catching the complimentary shuttle up to the hospital, watching Liam sleep peacefully for the first hour and a half...

The nurse said he did well overnight, they're still flushing his tube, not as much coming out as what's going in so we're on the right track again. I went on my usual break but when I got back I wasn't cleared to go into NICU. This happens from time to time, when there's a new admission that needs some work done without a lot of people milling about, when a baby needs a bedside procedure done in a sterile environment, or when a baby is in distress. A nurse was nice enough to pop out and tell me it wasn't my baby that was getting worked on. That was very comforting, even though I wasn't really worried about him. I think for the most part we are past the craziness.

An hour later they let me come back, they had gotten a new patient that was needing a lot of assistance. Our nurse sent some other nurses over to give Liam a suppository (newly ordered by the surgeon to make this boy go) and to make sure I got settled into holding him (our nurse was tied up with the new baby). You could tell the mood was different in the NICU, apprehension, expressionless faces... At one point a different nurse came back and slid the door shut to our private room to give more privacy to whatever was going on with the other baby. I guess maybe I was the only other parent in our section, but since we have a private room off the main floor they let me stay? I couldn't see what was going on from my chair, but I could see nurses standing back watching from across the room. What was weird was how quiet the whole NICU was. I pictured a crazy, dramatic scene like you see on "ER" or something where people are hollering, stuff getting tossed around, a total frenzy when things are going bad. But it was completely silent. It's like even the other babies knew now was not the time to fuss.

Back when we were first getting used to the beeps and buzzes in NICU, a nurse explained to us most of the sounds are to keep them posted with how baby or their med doses were doing but there's one sound that they all run to- and you'll know it when you hear it. Well I think I heard it today. And again- no chaos, just quiet work. Our nurse came in just a little while later to make sure we were ok. She asked if I wanted to stay longer (past visitation) because I was keeping Liam from fussing which freed her up to keep working on the other baby. Of course I said yes so we stayed in our little room and I just kept appreciating how good we actually have it compared to what the parents out there were going through.

So today was the second time a baby passed away since we've been here. That's about one a week so far.

Liam was sleeping peacefully during my afternoon visit so I just watched him and settled him when he stirred. Pretty soon it was time for Riley to arrive for his afternoon visit, so I took a break and went to play with him.

We were continuing our marathon game of Monopoly (at least I got hotels up this time before he bankrupted me) when I got a phone call from the hospital. This was the first time they have ever called me, and I would have been worried but Steve's parents were up there visiting at the time so I figured if something was wrong they would have texted or something. Our nurse was calling with the good news- LIAM HAS POOPED. And we're not talking about the rabbit pellets like late last week. We're talking the full-fledged-this-little-dude-has-stinky-pants kinda poo. She was soo excited she had to call and tell me! I'm glad she ended her shift on the happier note of Liam pooping (as silly as that sounds). He'll be getting the suppositories every day to try to keep the poop coming. Another step in the right direction! We hope it continues for the rest of the week so we can look at feeding by the weekend (maybe?).

Steve arrived from work and Riley filled him in on the good news. We all went out to eat and then sent Riley on his way back to Daphne with Steve's parents. Steve and I went up to see Liam one more time before bed and to do his bedtime routine. We arrived in time to give him a bath, lotion him up, and get new clothes on him. He tried to take aim at me when I was changing his diaper, but this isn't Mommy's first rodeo so I was able to side-step the stream in time. :) The night nurse brought some blankets from the warmer to get him all snuggled up and he started to get sleepy soon after that. We kissed his head and I made my way back to the house while Steve got on the road to Daphne.

I'm so thrilled we kept tracking forward today. I'm also grateful to know I get to spend another day loving on my baby again tomorrow...

... And One Step Back

My friend Bonnie (a veteran NICU mommy) warned me that things will go up and down in NICU life so don't feel blind-sided when it does. I have to count ourselves lucky though that Liam's step back today was only disheartening and not life-threatening.

After several great days of very little gastric drainage (and even some nearly clear drainage last night- an awesome sign), this morning I was greeted with the news that a lot of drainage came up overnight and was back to very green (not so awesome sign). Twice. Siiigghhh. We were so close to convincing surgery to let us try him with some CCs of milk I've been pumping and then it felt like we're back to square one again. His pediatrician even "took one for the team" and sacrificed her pinky into his bootie to see if there was anything up there that could come out. There wasn't (I think Liam said, "Dur, I could have told you THAT").

The nurse explained that the extra drainage might have just been some fluid treatment (a diuretic) they had been giving him since his legs were swelling (nothing to be alarmed about, just part of the body recovering). She sent off some labs just to be sure he wasn't having a sodium-potassium imbalance (all was fine). His last treatment of the diuretic was tonight at 11p so hopefully we see some improvement tomorrow once that passes through his system.

Liam had a great sleep in the morning and then was ready for some more Kangaroo Care by late morning. Poor guy knew lunch was around him somewhere, so he turned his head in and was trying to figure out where it was- testing spots high up on my chest close to my neck. It was so cute because it felt like he was giving me a ton of little kisses, but I know he was really trying to find something to latch on to. I'll just pretend they're kisses. :) The nurse had also said he was giving her kissy-faces early in the morning- I said he's trying to kiss up to anyone that can feed him. Smart guy! I showed him more pictures of Riley on my iPhone until he nuzzled in and fell asleep for the rest of visitation. It was hard to leave because I was going to Daphne for the afternoon and wasn't going to see him until late tonight.

The quick visit home was fun; always nice to get away from hospital life and do something special with Riley. On the agenda today was his cub scout meeting. We were in charge this week and we made pine cone bird feeders (with peanut butter and bird seed). The boys seemed to enjoy it and Riley liked acting like he was a teacher or something. No idea where he gets his outgoing-ness. Tonight bedtime went a lot more smoothly- mainly because we skipped out before he got put to bed. That seemed to work tremendously well. Steve's dad texted us about 30 mins after we left saying Riley was already asleep and all was good! I'm thrilled because all I had to do was give him a kiss goodbye and a "see ya tomorrow" and he was fine! Steve drove me back to Pensacola so he could see Liam before bedtime. The things he's doing for his family...

I think I've sorted out it's hard for me to go home because I feel like I'm leaving Liam behind, like our family isn't all together yet so I shouldn't be home. I don't like going into his room because I don't know yet when he'll be home to enjoy it. It's just not fun being in there right now setting things up- not until we're closer to his discharge date. I do realize it's better for me to be at RMH because I'm around other parents who are going through the same kinds of things we are. It's hard to throw yourself a pity party when there's other people who have it so much worse and you see it every day. It's kind of a quiet support. I've chatted with some of the parents, but not had any "deep and meaningfuls" (as the Aussies say). Just being around everyone is comforting enough. I told one of the cub scout moms tonight, it would probably be harder going home each night because everyone in Daphne is carrying on their normal lives and we can't for the moment until Liam is well enough to come home. I'm so thankful I'm just down the road from my baby instead of in the next state over. And I know that Ri is doing great at home surrounded by his family- so that makes me feel better about the whole situation.

Steve's visit tonight was great. Liam slept for the first part- AND HE'S WEARING REAL CLOTHES!!! He had the cutest little onsie on- he looked like a real baby!! They have a ton of donated clothes in the NICU so as stuff gets soiled they just toss it into the NICU wash (that way we don't lose any of our clothes we would bring up). It was such a great surprise to see him like that!! He's vitals have been fine, but his weight's come down a bit. He's at 6lbs 5oz, for a loss of 3 oz since birth. Not bad, all babies lose weight after they're born. His weight has been all over the place (was nearly 7 lbs the other day) but that's from all the fluids they run through him. His actual weight gain/loss can't really be calculated until he's starting feeds. (Pics of Liam in his real clothes to come)

Speaking of feeds, it sounds like the consensus from the surgeon's NP is that once his fluid runs clear or there isn't any more, we can try feeds. YIPPEE!!!! No more waiting on poop!! The night nurse flushed his gastric tube while we were there (basically pumps saline into the tube down to his stomach to see what comes back up). Very little came out and it was a lighter green then earlier in the day so his stomach is clearing up again. I don't want to get my hopes up too much, but glad to see things are moving in a better direction now.

Steve's night ended with a great snuggle from Liam. Liam was very alert and interacting a lot with his Daddy which you could tell Steve loved. At one point Steve pretended he was going to eat the little feet that were sticking out of the blanket and Liam got a big surprised look on his face when Steve nibbled his toes. I think we even saw some attempts of a smiles in there too. When Steve was nose-to-nose with him, Liam was trying to hold Steve's gaze but kept going cross-eyed so he'd shake his head to readjust. Just funny to watch the two of them play together. Steve got on the road late, but you could tell the hour he had with his son was definitely worth the drive.


PS- Please excuse the previous couple days of posts if some spots didn't make sense. I had been too tired to go back and reread what I wrote- all I managed to get done was clicking the spell check button. I got to proofread tonight so it should read ok. I'll just fix the last few days another time. You get the idea though!