The Chris Daughtry song seemed appropriate enough- Sunday was our homecoming!! It was a long day getting out of there, but worth every minute of it!
Steve went up first while I let Riley pig out on Pop Tarts at the House (a treat for him since we don't keep them at home). I was dying to get the report on how Liam did over night, to find out if we were really going home today. I waited and waited and texted Steve and waited. He finally came back to the house- he had no signal up there (pooh!). He said Liam came through the night like a champ and everyone says discharge should be possible today but no doctors had rounded yet to verify.
During the morning break we took a quick trip over to the Toys R Us/ Babies R Us to get some last minute items. Now that we knew how big Liam was going to be coming home we could get the right sized diapers, nipples for bottles, and an outfit to go home in. We decided against doing a fancy outfit because who's going to see him besides just all of us right now anyway? By the sound of things we probably wouldn't get discharged till later in the day anyway- too late for any visitors (never mind needing to keep germs to a minimum). Steve picked out a Daddy's All Star baseball outfit (he IS an All-Star/ Rock Star isn't he? Liam- not Steve. :) ). We also got Riley a new Monopoly game since he loved playing the one at the House so much. Ri was such a trooper through the whole ordeal.
Steve and I went up in the afternoon and the doctor had Liam's chart and was writing his discharge summary!!! We were told this can take a few hours so we busied ourselves with last minute paperwork with the nurse and then headed back to the House to pack up and clean out our room there. We still couldn't believe it was all about the happen!! Mal and Shez entertained Riley at the House while we went back up to get our baby boy.
It felt surreal getting into the car with him. Like at any moment they would say- oh wait, there's been a mistake- bring him back. Or something would happen with him to where we'd have to turn around and take him back. But no- all was fine, we pulled up to the Ronald McDonald House for hopefully the last time (except for visits!) and Riley finally got to meet his little brother face-to-face. He was so very proud and so excited. This is the big brother I knew! We all three piled in the back of the car and Daddy drove us home. Riley commented on us now being a family of four. I couldn't stop grinning. I caught Steve looking at us in the review mirror, so happy his family was all together again and he was taking us home.
Riley gave Liam a complete run down of the neighborhood as we pulled in. He's quite the seasoned big brother already! I was half-teasing when changing Liam when I asked Ri to throw away the dirty diaper. He said- no problem mom! I know how to work the diaper pail! We then all got settled in on the couch so Riley could hold Liam for the first time. I was worried Ri would be disappointed because Liam was fussing when I handed him over, but Riley must be a baby whisperer because Liam calmed right down in his big brother's arms. He even gave Liam his bottle and looked like a pro! I think these two are going to be quite a pair!
Thanks to all of you who took this journey with us. I'll post as events happen, but probably not every day. I do owe y'all lots of pictures, so check back frequently this week as we get them all posted. We couldn't have made it through in such high spirits without every one of you supporting us along the way. We are truly thankful for everything.
Much love,
The Ripp Family of Four. :)
Monday, February 21, 2011
Saturday, February 19, 2011
Movin' On Up (movin' on up)...
to Level 2 siiiide! We finally know when we'll say good byyyyeee.
Steve took on Daddy duty yesterday when Riley and I went back to Daphne for his basketball game. Liam's PIC line is now out!! We can see (and admire) his gorgeous, IV-free head! It's a very nice shaped head too. :) Steve was in charge of Liam all morning for he feedings, burpings, snuggles, and naps. The nurse assured me he did an excellent job.
While Riley and I were home we stopped by the house to get Liam's room straightened back up. I had been tossing last minute things in just before he was born and Riley and I had a project started in the middle of the floor we needed to put away. Word is we can probably go home Sunday as long as nothing crazy happens between now and then. Steve had hauled over the car seat Friday night, but I needed to put together a diaper bag for the ride home, take inventory of any last-minute things we still needed, and sort out what he was going to wear. We could also buy diapers now that we knew how big he was going to be coming home- yay!
Riley and I went back to Pensacola so I could swap out with Steve and get some Liam time in. The nurse in the afternoon was going over discharge information with me, I was so excited it was hard to keep paying attention. She also had a rolling bassinet for me so Liam and I could go into a private room and breastfeed instead of being out on the main floor with privacy blinds up around me. He liked the ride and I loooooved being able to get comfortable in the private breastfeeding room. I teased with his nurse saying- ok I'm just going to take my baby home now, bye! She laughed but said no, he needs to still come back. Almost though!
After that Liam got settled into his late afternoon nap and I went back to the House so Steve and I could spend some time with Riley. It was the first gorgeous day we had so far this year- temps in the mid 70s so we hit Pensacola Beach with RiBear in the middle of February. Everyone else had the same idea, it was still busy when we got down there in late afternoon. The water was still way too cold, but Riley had a good time getting his feet wet, burying himself in the sand, and finding seashells. We caught some dinner at a nearby boardwalk and headed back to the hospital because we had a very special appointment to keep.
Riley got to see Liam through the glass door! A nurse the night before said Liam was so close to going home and he was only tethered with leads now so it was fine to roll him out to see big brother. I finally saw glimmers of Riley showing interest again in his brother after being disenchanted for most of the past week. Steve got a surprise when he scrubbed in to get Liam (I stayed out in the hall w Ri)- our baby had been moved!!!
Liam graduated to Level TWO! We'd been in Level 3 since admission, which is critical care. We had only been in 3a (3c keeps the sickest babies). Level 2 is a step closer out the door!! So Steve and the nurse got Liam settled into the rolling bassinet again and brought him over to the door. I couldn't see Riley's face, but the nurse told me later he looked very excited. He spoke so sweetly to Liam, saying introducing himself as the big brother. Riley even wanted to record a message on my iPhone to play for Liam when I went into the NICU. He said he's so excited to be Liam's big brother, he loves him very much and can't wait to get him home. I was so thrilled Riley was showing interest again in the baby!! I guess the disconnect in not getting to see or talk to Liam was what was wrong.
We had been told Sunday is a real possibility to come home so I was eager to see how the evening rounds went. The night nurse at first said the doctor might not release him if Liam's still losing grams (he dropped just under an ounce from the night before). Then the rounding doctor breezed through and said Liam's doctor was ok for him to go home Sunday as long as he stayed above birth weight. He weighed just shy of a pound above so we were in the clear. YAY! Now I had to hold my breath that nothing freaky happened overnight to set us back.
Could tomorrow be the day???
Steve took on Daddy duty yesterday when Riley and I went back to Daphne for his basketball game. Liam's PIC line is now out!! We can see (and admire) his gorgeous, IV-free head! It's a very nice shaped head too. :) Steve was in charge of Liam all morning for he feedings, burpings, snuggles, and naps. The nurse assured me he did an excellent job.
While Riley and I were home we stopped by the house to get Liam's room straightened back up. I had been tossing last minute things in just before he was born and Riley and I had a project started in the middle of the floor we needed to put away. Word is we can probably go home Sunday as long as nothing crazy happens between now and then. Steve had hauled over the car seat Friday night, but I needed to put together a diaper bag for the ride home, take inventory of any last-minute things we still needed, and sort out what he was going to wear. We could also buy diapers now that we knew how big he was going to be coming home- yay!
Riley and I went back to Pensacola so I could swap out with Steve and get some Liam time in. The nurse in the afternoon was going over discharge information with me, I was so excited it was hard to keep paying attention. She also had a rolling bassinet for me so Liam and I could go into a private room and breastfeed instead of being out on the main floor with privacy blinds up around me. He liked the ride and I loooooved being able to get comfortable in the private breastfeeding room. I teased with his nurse saying- ok I'm just going to take my baby home now, bye! She laughed but said no, he needs to still come back. Almost though!
After that Liam got settled into his late afternoon nap and I went back to the House so Steve and I could spend some time with Riley. It was the first gorgeous day we had so far this year- temps in the mid 70s so we hit Pensacola Beach with RiBear in the middle of February. Everyone else had the same idea, it was still busy when we got down there in late afternoon. The water was still way too cold, but Riley had a good time getting his feet wet, burying himself in the sand, and finding seashells. We caught some dinner at a nearby boardwalk and headed back to the hospital because we had a very special appointment to keep.
Riley got to see Liam through the glass door! A nurse the night before said Liam was so close to going home and he was only tethered with leads now so it was fine to roll him out to see big brother. I finally saw glimmers of Riley showing interest again in his brother after being disenchanted for most of the past week. Steve got a surprise when he scrubbed in to get Liam (I stayed out in the hall w Ri)- our baby had been moved!!!
Liam graduated to Level TWO! We'd been in Level 3 since admission, which is critical care. We had only been in 3a (3c keeps the sickest babies). Level 2 is a step closer out the door!! So Steve and the nurse got Liam settled into the rolling bassinet again and brought him over to the door. I couldn't see Riley's face, but the nurse told me later he looked very excited. He spoke so sweetly to Liam, saying introducing himself as the big brother. Riley even wanted to record a message on my iPhone to play for Liam when I went into the NICU. He said he's so excited to be Liam's big brother, he loves him very much and can't wait to get him home. I was so thrilled Riley was showing interest again in the baby!! I guess the disconnect in not getting to see or talk to Liam was what was wrong.
We had been told Sunday is a real possibility to come home so I was eager to see how the evening rounds went. The night nurse at first said the doctor might not release him if Liam's still losing grams (he dropped just under an ounce from the night before). Then the rounding doctor breezed through and said Liam's doctor was ok for him to go home Sunday as long as he stayed above birth weight. He weighed just shy of a pound above so we were in the clear. YAY! Now I had to hold my breath that nothing freaky happened overnight to set us back.
Could tomorrow be the day???
Friday, February 18, 2011
Goooo Liam Go!
Well my boy is back on track. We had a great day of breastfeeding- I think we're both learning this together. We were letting him have ala carte meals today- waiting on his cues of when to eat and how much he wanted to take. With me, he liked doing short meals around 15 mins every hour and a half to two hours. I don't plan on being at his disposal quite like that for the long-term, but I'll stick it out while we see what all his belly can do. The night nurse said he took his dinner bottle feed very well and it was a full feed. He was plenty hungry by 8 pm so his belly seems to be getting the hang of this eating thing.
Oh and for those who are keeping a tally- yes we had more poop today. :) And no major spit ups that an ordinary baby wouldn't do. Hooray!
Had girlfriends visit today- Stacey and Laurie came to town and we went to breakfast during the break. It's always great to have people from the "outside" drive all the way over to make your day. I keep thinking as I get comments about the blog, people calling to ask questions about the blog, and friends coming over, texting, FBing and emailing me- I couldn't have done this without all the support we've had. Even a simple line makes my day. Knowing people out there care about and are thinking of our family has made all of the difference. I see some people that don't appear to have that kind of support system and I wonder how do they make it through the day? Thank you from the bottom of my heart for being there in your own special way- all of it has meant so much to us.
The afternoon went well because my RileyBear has come for the weekend!!! He was in such a great mood- totally re-energized from his down day yesterday. Nana and Poppa must have done a great job!! We caught up, played some Monopoly (again!), and went out to eat. He got all snuggly with me in the spare bed in our RMH room while we watched TV until it was time for me to go up and do the night feeding with Liam. Steve stayed back and got Riley to sleep.
I passed the pediatrician in the hallway and she said Liam is looking so "rosy" he might be ready to go home Sunday or Monday. She keeps moving up the day which gets me excited and nervous. I almost don't want to say it out loud like it won't come true if I do. She said he should gain weight over the weekend. When we weighed him tonight though, Liam's lost a few more ounces since going off fluids. I kinda expected that the first few days off the IV- he'd better turn it around tomorrow though! He had an awesome feed tonight so I hope that helps!
Steve swapped with me and went to give Liam his nightly bath and get some bonding time in. It was Steve's first time doing the bath, I was so proud of him! He said he spoke to the pediatrician while he was up there and she might not be that fussed about the weight loss if Liam seems to be feeling well enough. We'd have to get in with his pediatrician in Daphne right away to make sure he's transitioning ok once we get home. She also told him something that blew my mind. I know that if Liam has a stomach ache as he grows up we should take it more seriously than the average kid. But she told Steve make sure whatever doctor he goes to knows immediately that Liam was a gastro baby because if, for example, his appendix is rupturing but he's complaining of pain on his left side, the doctor might blow it off as something else. There's really now way to know where all of his guts ended up when it got fed back in. They are most likely not in the usual set up the rest of us have. Wow. Mind Blown. Durrr but something I would have totally overlooked.
The Discharge Class we took yesterday had an amazing piece of advice for us NICU parents. Keep a copy of our baby's discharge papers in his diaper bag (and in a safe place at home once he's grown up). That way we always have a copy no matter where we are. The papers they give us will be a full history of everything he's been through in NICU. I'm thinking I'm gonna load ours up on Google Docs so I can access it anywhere in the world that has an Internet connection.
We're getting close! Steve has brought over the car seat to put together. I need to start making my list of questions while we can still pick the brains of the doctors and nurses before we go. Looking forward to a great weekend!! :)
Mini Post...
It's so sad when you wake up to your "neighbor" in the next room at the Ronald McDonald House bawling their eyes out. I haven't spoken to this mom before so I feel funny about knocking on her door to check on her. I had thought about going out to one of the front desk people to see if they could make sure she's ok after a while. It sounds like she's the phone so maybe she can talk it through with them. Sometimes you just need to get out all of the worries, frustration, and heartache in a good cry fest and then you can face another NICU day.
I just hope there's not another baby gone too soon...
Update:
I heard my neighbor leave around 6am and thought oh no, that's not a good sign because quiet hours are from 6-8am and there's no visiting then. I passed her as I was leaving the House at 8:30 and again thought- oh dear, she's coming back when visiting hours are going on- that's not good. But when I got to the NICU door I didn't see the "signal" that a baby had passed. They put a special signal up on the door when a tragedy has occurred so staff coming in on shift change, etc know the mood is somber in NICU for a while. I was relieved and went about my morning.
I asked at the House desk when I got back from lunch if anyone knew if my neighbor was ok as she was very upset this morning. Sad news. She did in fact lose her child and has already checked out. I felt sooo sad for her and got a chill. I had heard a mother getting the news that her baby didn't make it. How awful! I sometimes feel guilty when I hear about someone's baby taking a turn for the worse or passing. I feel bad mine is doing so well while others are not. Maybe it's like survivor's remorse or something. I know I shouldn't feel guilty, I should feel relieved and thankful. I am all of those things- it's just hard to explain the mix of emotions is all. :(
Another week- another baby gone. That's four that I know of now...
I just hope there's not another baby gone too soon...
Update:
I heard my neighbor leave around 6am and thought oh no, that's not a good sign because quiet hours are from 6-8am and there's no visiting then. I passed her as I was leaving the House at 8:30 and again thought- oh dear, she's coming back when visiting hours are going on- that's not good. But when I got to the NICU door I didn't see the "signal" that a baby had passed. They put a special signal up on the door when a tragedy has occurred so staff coming in on shift change, etc know the mood is somber in NICU for a while. I was relieved and went about my morning.
I asked at the House desk when I got back from lunch if anyone knew if my neighbor was ok as she was very upset this morning. Sad news. She did in fact lose her child and has already checked out. I felt sooo sad for her and got a chill. I had heard a mother getting the news that her baby didn't make it. How awful! I sometimes feel guilty when I hear about someone's baby taking a turn for the worse or passing. I feel bad mine is doing so well while others are not. Maybe it's like survivor's remorse or something. I know I shouldn't feel guilty, I should feel relieved and thankful. I am all of those things- it's just hard to explain the mix of emotions is all. :(
Another week- another baby gone. That's four that I know of now...
Thursday, February 17, 2011
The Beginning of the End??
No proofreading again- read at your own risk!
BIG NEWS- Liam's completely off fluids!!! His IV bag and "tether" are gone! All that's left is his PIC port in his head just in case they needed to start IVs again, he doesn't have to get poked a second time. So he still looks like RoboBaby, just one less line. Another milestone!!
Also- for those DYING to know, left squeezed out a lovely dirty diaper just in time for me to change this morning.:)
So after a great day yesterday, I went beboping on up to NICU thinking Liam and I will have a great breastfeed for breakfast. He had other plans. He was totally not interested. Not with either side. Not after I cuddled him first and then tried again. He was clearly going to make me work for this, the stinker. After a good effort, we went with the bottle which he took just fine. Oh well, at least he was fed. I wondered if the overnight bottle feedings might have confused him so he wasn't ready to go back to breast. I didn't go up to NICU for the night feeds because I have to call for the hospital shuttle (runs complimentary from the House 24 hours a day!) and scrub in all to feed him for maybe 20 minutes. Just not worth the sleep deprivation at this time. I also thought, maybe I smelled too much like my Forever Sunshine soap from the shower and not like myself so maybe that put him off.
I wasn't discouraged though. I knew he could do it, I just had to recreate what I did yesterday that worked so well. I went back to the House so I could pump (since he took a bottle) and waiting for the next visiting session to try again.
Lunchtime still presented problems. He was almost downright fussy, pushing me away. Then I started to worry a bit. I tried to recall everything the lactation consultant said yesterday to be sure I had cuing and positioning correct. I made sure I relaxed so he didn't feel me tense. I made sure to calm him down so he wasn't worked up. Nothing helped. I gave up for the second time and got him a bottle. We had gotten the all clear from his pediatrician to go up to max feeds if he wanted to take that much. So we tried it with the bottle to see how much he would take if given the opportunity. He must have been hungry because it took it all. Then he was happy and ready for a cuddle before visiting was over. I do believe I even saw some smirks when he knew he won by getting the bottle. Bottle feeding is much easier for babies then breastfeeding because they don't have to use as many muscles and as much effort when bottle feeding. So this kid was already learning how to work the system?? I'm in trouble.
His day nurse and I decided it was time to bring in reinforcements and get the lactation consultant back up to see what I can do differently. When I went back up for his mid-afternoon feed at 3pm he was still very sleepy and was even spitting up some of his lunch. We tapped on his lips and held his hand up to his mouth to see if he'd "fist" it (a sign he's ready to eat). We got nothing. He was still snoozing and obviously full from lunch still. So I waited. And waited. An hour later he was still snug as a bug. It was decided that at 4:30p it would be time to get him up and try again. I gave him a bath and we got his vitals just to be sure he was good and awake. After he got a fresh diaper and jammies on we gave breastfeeding another go. I held my breath, so nervous we would fail again.
The boy ate! Hopped right on like it was no big deal and did beautifully. He got a full feed and a nice burp out. Sweet relief!! I was so excited! He wasn't confused by switching, he was just telling us what he wanted (or didn't want as the case were). Steve had arrived about the same time and I claimed that Liam knew his daddy was there and he better shape up. Steve came over earlier than usual because we had to attend our Discharge Class. Our what?? You read that right- our Discharge Class. The past two days we've been hearing Liam might go home sometime next week. Now we're hearing more toward the start of next week, there's so much to do!! The Discharge Class is required for parents of NICU babies before they can be released. It was a great class with a superb instructor (in my professional opinion- grin) that went over the basics of baby care and some extra things we need to be mindful of with NICU babies. It was a great refresher for me since it's been so long since I've done this. And it was great for Steve since this was his first baby verses the toddler I had when we first met. We're going to try to do a CPR class on Monday if we can as well.
Ya- so discharge!! When I first heard people buzzing about it, I kinda blew it off as that would be nice to go home next week, but I'm not going to get my hopes up yet. Then when more of his doctors were saying it, I was thinking- wow, this is a real possibility! Today the pediatrician said once Liam's doing full feeds consistently and gaining weight he should be set to go- Monday or Tuesday if things stay on track. The surgeon (Dr Lewis) came by and looked at his belly and discussed his progress with me. She also threw out the Monday or Tuesday time frame. Oh my gosh, was this really going to happen so soon?? Liam was just 3 weeks old today (today was his due date by the way!). Could we really be out of here in just under a month. It's what I thought might be possible, but I didn't want to get let down. It seems surreal and yet very do-able all at the same time. I need to straighten up his room, buy diapers (had no idea what size he'd be coming home so I had put that off), we need to hook up the monitor and put together the car seat. So much to do!!
And it couldn't come a moment too soon. Riley is officially over all of this mess. He's said a few times this week he didn't want to come to the Ronald McDonald House, but Shez and Mal managed to coax him over Monday. Then we went home Tuesday and Wednesday, but Riley was not at all interested in coming over today. Which is a shame because he had a half day and it would have been fun to get a movie or go find something to do in town. He said he wanted to stay at his house, with his toys and not go anywhere. Can't blame the kid after getting carted back and forth for the past three weeks. He did great, it was a good run, but I think Riley has hit his wall. Shez said she thought Riley wanted to be in control of something so they let him choose whatever he wanted to do after school. It sounds like they had a blast outside in the gorgeous weather. Steve's parents were also glad to get in some good Riley-time where they had him all to themselves. They really hadn't gotten that opportunity since they've been over. They've mainly been Riley's driver!
I was sad I didn't get to see my other "baby" as he lights up my day. I was also sad that he's feeling the strain of the situation, no kid should have to go through this. I hate too that he missed out on saying goodbye to Ms Grace, his most favorite volunteer at the House. Her last day was today (she's going to Officer Training School for the Navy) and they had big plans to make a cake and frost it. I didn't even get back to the house to tell her why he wasn't there and to say goodbye because we had to do the Discharge Class tonight during dinner break. I hope to get her details from the staff here so we can give her a proper goodbye. She was a lifesaver with Riley and one of the biggest reasons he loved coming over. It made the transition easier for us. She'd play with him on the playground, she made Rice Krispie treats with him for the Super Bowl party, and was just always checking up on how his day was. He adored her so that's how I knew Riley was just over everything. Hopefully, he'll want to come stay the weekend and then we'll be home for good in a few short days.
I'm almost too scared to believe it could happen....
BIG NEWS- Liam's completely off fluids!!! His IV bag and "tether" are gone! All that's left is his PIC port in his head just in case they needed to start IVs again, he doesn't have to get poked a second time. So he still looks like RoboBaby, just one less line. Another milestone!!
Also- for those DYING to know, left squeezed out a lovely dirty diaper just in time for me to change this morning.:)
So after a great day yesterday, I went beboping on up to NICU thinking Liam and I will have a great breastfeed for breakfast. He had other plans. He was totally not interested. Not with either side. Not after I cuddled him first and then tried again. He was clearly going to make me work for this, the stinker. After a good effort, we went with the bottle which he took just fine. Oh well, at least he was fed. I wondered if the overnight bottle feedings might have confused him so he wasn't ready to go back to breast. I didn't go up to NICU for the night feeds because I have to call for the hospital shuttle (runs complimentary from the House 24 hours a day!) and scrub in all to feed him for maybe 20 minutes. Just not worth the sleep deprivation at this time. I also thought, maybe I smelled too much like my Forever Sunshine soap from the shower and not like myself so maybe that put him off.
I wasn't discouraged though. I knew he could do it, I just had to recreate what I did yesterday that worked so well. I went back to the House so I could pump (since he took a bottle) and waiting for the next visiting session to try again.
Lunchtime still presented problems. He was almost downright fussy, pushing me away. Then I started to worry a bit. I tried to recall everything the lactation consultant said yesterday to be sure I had cuing and positioning correct. I made sure I relaxed so he didn't feel me tense. I made sure to calm him down so he wasn't worked up. Nothing helped. I gave up for the second time and got him a bottle. We had gotten the all clear from his pediatrician to go up to max feeds if he wanted to take that much. So we tried it with the bottle to see how much he would take if given the opportunity. He must have been hungry because it took it all. Then he was happy and ready for a cuddle before visiting was over. I do believe I even saw some smirks when he knew he won by getting the bottle. Bottle feeding is much easier for babies then breastfeeding because they don't have to use as many muscles and as much effort when bottle feeding. So this kid was already learning how to work the system?? I'm in trouble.
His day nurse and I decided it was time to bring in reinforcements and get the lactation consultant back up to see what I can do differently. When I went back up for his mid-afternoon feed at 3pm he was still very sleepy and was even spitting up some of his lunch. We tapped on his lips and held his hand up to his mouth to see if he'd "fist" it (a sign he's ready to eat). We got nothing. He was still snoozing and obviously full from lunch still. So I waited. And waited. An hour later he was still snug as a bug. It was decided that at 4:30p it would be time to get him up and try again. I gave him a bath and we got his vitals just to be sure he was good and awake. After he got a fresh diaper and jammies on we gave breastfeeding another go. I held my breath, so nervous we would fail again.
The boy ate! Hopped right on like it was no big deal and did beautifully. He got a full feed and a nice burp out. Sweet relief!! I was so excited! He wasn't confused by switching, he was just telling us what he wanted (or didn't want as the case were). Steve had arrived about the same time and I claimed that Liam knew his daddy was there and he better shape up. Steve came over earlier than usual because we had to attend our Discharge Class. Our what?? You read that right- our Discharge Class. The past two days we've been hearing Liam might go home sometime next week. Now we're hearing more toward the start of next week, there's so much to do!! The Discharge Class is required for parents of NICU babies before they can be released. It was a great class with a superb instructor (in my professional opinion- grin) that went over the basics of baby care and some extra things we need to be mindful of with NICU babies. It was a great refresher for me since it's been so long since I've done this. And it was great for Steve since this was his first baby verses the toddler I had when we first met. We're going to try to do a CPR class on Monday if we can as well.
Ya- so discharge!! When I first heard people buzzing about it, I kinda blew it off as that would be nice to go home next week, but I'm not going to get my hopes up yet. Then when more of his doctors were saying it, I was thinking- wow, this is a real possibility! Today the pediatrician said once Liam's doing full feeds consistently and gaining weight he should be set to go- Monday or Tuesday if things stay on track. The surgeon (Dr Lewis) came by and looked at his belly and discussed his progress with me. She also threw out the Monday or Tuesday time frame. Oh my gosh, was this really going to happen so soon?? Liam was just 3 weeks old today (today was his due date by the way!). Could we really be out of here in just under a month. It's what I thought might be possible, but I didn't want to get let down. It seems surreal and yet very do-able all at the same time. I need to straighten up his room, buy diapers (had no idea what size he'd be coming home so I had put that off), we need to hook up the monitor and put together the car seat. So much to do!!
And it couldn't come a moment too soon. Riley is officially over all of this mess. He's said a few times this week he didn't want to come to the Ronald McDonald House, but Shez and Mal managed to coax him over Monday. Then we went home Tuesday and Wednesday, but Riley was not at all interested in coming over today. Which is a shame because he had a half day and it would have been fun to get a movie or go find something to do in town. He said he wanted to stay at his house, with his toys and not go anywhere. Can't blame the kid after getting carted back and forth for the past three weeks. He did great, it was a good run, but I think Riley has hit his wall. Shez said she thought Riley wanted to be in control of something so they let him choose whatever he wanted to do after school. It sounds like they had a blast outside in the gorgeous weather. Steve's parents were also glad to get in some good Riley-time where they had him all to themselves. They really hadn't gotten that opportunity since they've been over. They've mainly been Riley's driver!
I was sad I didn't get to see my other "baby" as he lights up my day. I was also sad that he's feeling the strain of the situation, no kid should have to go through this. I hate too that he missed out on saying goodbye to Ms Grace, his most favorite volunteer at the House. Her last day was today (she's going to Officer Training School for the Navy) and they had big plans to make a cake and frost it. I didn't even get back to the house to tell her why he wasn't there and to say goodbye because we had to do the Discharge Class tonight during dinner break. I hope to get her details from the staff here so we can give her a proper goodbye. She was a lifesaver with Riley and one of the biggest reasons he loved coming over. It made the transition easier for us. She'd play with him on the playground, she made Rice Krispie treats with him for the Super Bowl party, and was just always checking up on how his day was. He adored her so that's how I knew Riley was just over everything. Hopefully, he'll want to come stay the weekend and then we'll be home for good in a few short days.
I'm almost too scared to believe it could happen....
Wednesday, February 16, 2011
Get Ready to Have Your Mind Blown, Part 2
I'll try to remember as much as I can from yesterday- everything's blending together because it's moving so fast!! Again, a lot to write so I'm not proofing the below- good luck! Hope it makes sense...
WEDNESDAY
Today was the big day- trying breastfeeding!! He did the 8:30am bottle feed as normal because we wanted to make sure he had ramped up enough in amount to handle a feed from me (where we can't really tell how much he's getting). I got a great report from the pediatrician- Liam has done well tolerating his feeds increasing, he's not spitting up any unusual amounts or colors, he's pooping regularly, and his belly has remained soft (a hard belly would indicate back up from an obstruction). He will have his TPN (nutrition that he's been getting through the IV in his head that feeds directly into his bloodstream via a tiny line that runs down a blood vessel to just above his heart) discontinued later that night so we can see if he'll gain weight with just the milk on his own (which he has to do to be discharged). He had a little swelling in his legs, but they think it's the extra fluids so yet another reason to discontinue the TPN.
Liam and I had a lunch date scheduled for 11am with the lactation consultant (and my mom who was back visiting before heading home). The lactation consultant was a HUGE help. Even though I breastfed Riley with ease, it was also over 6 years ago and he breastfed as soon as he was pulled out. Liam was just learning how to feed period and now we were working backwards from bottle to breast. He also has the leads and the IV line to work around too which can make things cumbersome. There was so much to remember- I was working hard!
There are many ways to get him to latch on, but we started with a belly-to-belly approach where he lays across my lap on the Boppy (a C-shaped pillow awesome for breastfeeding) with his tummy against mine and one of my arms going up his back so my hand is on the back of his head. This way I can control his head position and provide him support from the back so he feels secure. The other hand was guiding "lunch" into his mouth until he got a good hold on what he should be doing. Once he got latched on well, the consultant pointed out things to look for to make sure he was getting a good feed (head, ear, and shoulder alignment, checking his bottom lip for a good seal, making sure his nose, cheeks, and chin were right up against me so he was getting a good position, and finally listening and looking for a swallow to make sure he was getting food in him and not just treating me like a pacifier). I told you it was a lot of information!! Liam was a champ- he had no "nipple confusion" as they call it, I think he was just happy he was still getting fed he didn't care what packaging it came in!
The feed was a success and I was elated! Breastfeeding was so important to accomplish, especially for him, because my body will produce more milk if I breastfeed vs pumping (weird how it can tell a difference). It definitely saves me time because I don't spend my free moments pumping- I can do other things! Either way, I need to try to produce for him as long as I can for the first year (even if we do bottle after teething starts) because my body will specially formulate the milk to help aid his intestine repair (crazy how the body just KNOWS). You might recall the statistic the GI surgeon gave us during the consult- gastro babies that aren't fed with breast milk have a 50% higher chance of their intestines becoming necrotic (dying) and needing them cut out. Talk about pressure to keep the meals coming! Let's not forget the bonding between mother and baby when they're sharing that time nursing either. I still recall how much I loved nursing Riley, even those middle of the night feeds. Nothing better then seeing a fat baby with a milk drool all happy and sleepy after a good feed. You don't get those moments for long so I try to enjoy them while I can.
Off I went to celebrate our success with lunch with my mom, aunt, and Steve's parents. Everyone got a full update on the morning and Liam's hard work. Liam's afternoon feed was just as good so I was thrilled it wasn't a fluke. Then Shez and Mal drove me back to Daphne so I could take Riley to his basketball practice. Riley's needed some extra attention this week as he's quickly growing tired of the new arrangement. He was so psyched about going to practice so I just had to go home! It was good to be home for the second day in a row, even if it was for just a few hours. It was a gorgeous nearly-spring day and I was feeling good so Riley and I played around in the backyard for a while enjoying the fresh air and each other. He had a great night at practice and has really learned a lot in the short season. You can tell he's really trying to master the new skills- his coach is pretty great with the kids.
Again, the day ended all too soon and Steve and I were back on the road to Pensacola to see Liam for the evening. Riley didn't lose it when we left, but he was also nonchalant. It was probably better to not make a big production of us going. I still get sad when we start driving back to Florida. I'm ready to be living in my house again and not just visiting. I'm ready for all of my family to be under one roof. I'm ready for Riley to meet his brother.
The report Steve and I got when we made it up to NICU was that Liam had a great dinner-time feed from a bottle. Switching back and forth has been ok so far! Liam and I got to show off to daddy what we had worked so hard on that day- our night time feeding. Steve was impressed with how great Liam did breastfeeding. Another milestone passed! Now we just need to make sure this is a consistent thing- go Liam, go!
WEDNESDAY
Today was the big day- trying breastfeeding!! He did the 8:30am bottle feed as normal because we wanted to make sure he had ramped up enough in amount to handle a feed from me (where we can't really tell how much he's getting). I got a great report from the pediatrician- Liam has done well tolerating his feeds increasing, he's not spitting up any unusual amounts or colors, he's pooping regularly, and his belly has remained soft (a hard belly would indicate back up from an obstruction). He will have his TPN (nutrition that he's been getting through the IV in his head that feeds directly into his bloodstream via a tiny line that runs down a blood vessel to just above his heart) discontinued later that night so we can see if he'll gain weight with just the milk on his own (which he has to do to be discharged). He had a little swelling in his legs, but they think it's the extra fluids so yet another reason to discontinue the TPN.
Liam and I had a lunch date scheduled for 11am with the lactation consultant (and my mom who was back visiting before heading home). The lactation consultant was a HUGE help. Even though I breastfed Riley with ease, it was also over 6 years ago and he breastfed as soon as he was pulled out. Liam was just learning how to feed period and now we were working backwards from bottle to breast. He also has the leads and the IV line to work around too which can make things cumbersome. There was so much to remember- I was working hard!
There are many ways to get him to latch on, but we started with a belly-to-belly approach where he lays across my lap on the Boppy (a C-shaped pillow awesome for breastfeeding) with his tummy against mine and one of my arms going up his back so my hand is on the back of his head. This way I can control his head position and provide him support from the back so he feels secure. The other hand was guiding "lunch" into his mouth until he got a good hold on what he should be doing. Once he got latched on well, the consultant pointed out things to look for to make sure he was getting a good feed (head, ear, and shoulder alignment, checking his bottom lip for a good seal, making sure his nose, cheeks, and chin were right up against me so he was getting a good position, and finally listening and looking for a swallow to make sure he was getting food in him and not just treating me like a pacifier). I told you it was a lot of information!! Liam was a champ- he had no "nipple confusion" as they call it, I think he was just happy he was still getting fed he didn't care what packaging it came in!
The feed was a success and I was elated! Breastfeeding was so important to accomplish, especially for him, because my body will produce more milk if I breastfeed vs pumping (weird how it can tell a difference). It definitely saves me time because I don't spend my free moments pumping- I can do other things! Either way, I need to try to produce for him as long as I can for the first year (even if we do bottle after teething starts) because my body will specially formulate the milk to help aid his intestine repair (crazy how the body just KNOWS). You might recall the statistic the GI surgeon gave us during the consult- gastro babies that aren't fed with breast milk have a 50% higher chance of their intestines becoming necrotic (dying) and needing them cut out. Talk about pressure to keep the meals coming! Let's not forget the bonding between mother and baby when they're sharing that time nursing either. I still recall how much I loved nursing Riley, even those middle of the night feeds. Nothing better then seeing a fat baby with a milk drool all happy and sleepy after a good feed. You don't get those moments for long so I try to enjoy them while I can.
Off I went to celebrate our success with lunch with my mom, aunt, and Steve's parents. Everyone got a full update on the morning and Liam's hard work. Liam's afternoon feed was just as good so I was thrilled it wasn't a fluke. Then Shez and Mal drove me back to Daphne so I could take Riley to his basketball practice. Riley's needed some extra attention this week as he's quickly growing tired of the new arrangement. He was so psyched about going to practice so I just had to go home! It was good to be home for the second day in a row, even if it was for just a few hours. It was a gorgeous nearly-spring day and I was feeling good so Riley and I played around in the backyard for a while enjoying the fresh air and each other. He had a great night at practice and has really learned a lot in the short season. You can tell he's really trying to master the new skills- his coach is pretty great with the kids.
Again, the day ended all too soon and Steve and I were back on the road to Pensacola to see Liam for the evening. Riley didn't lose it when we left, but he was also nonchalant. It was probably better to not make a big production of us going. I still get sad when we start driving back to Florida. I'm ready to be living in my house again and not just visiting. I'm ready for all of my family to be under one roof. I'm ready for Riley to meet his brother.
The report Steve and I got when we made it up to NICU was that Liam had a great dinner-time feed from a bottle. Switching back and forth has been ok so far! Liam and I got to show off to daddy what we had worked so hard on that day- our night time feeding. Steve was impressed with how great Liam did breastfeeding. Another milestone passed! Now we just need to make sure this is a consistent thing- go Liam, go!
Tuesday, February 15, 2011
Get Ready to Have Your Mind Blown, Part 1
Sorry that I didn't get to post last night- the blog site was acting up so I called it quits and went to bed. I hope can remember everything that happened over the past two days! By the way- I’m not proofing this, so please excuse my mistakes- I’m pretty tired tonight.
TUESDAY-
First of all- I know you're dying of suspense- yes, he pooped!! He shot out the suppository as soon as the day nurse put it in yesterday and promptly followed it up with a sizable poo Tuesday. Everyone was terribly impressed.
Bottle-feeding went extremely well on Tuesday too. He's taking bottles like he's done it the whole time. I think he's just thankful to be fed, he doesn't want to fuss and mess it up! I got nervous first thing in the morning because when I was wiping off what I thought was extra milk from Liam's chin, I noticed his shirt was wet as well as his blanket. Once I got to changing his clothes and bedding, I saw it wasn't just spit up, but it was a bright yellow, like what had been coming up in his NG tube yesterday. My heart sank thinking we were already experiencing a set back and they would stop feedings and put the tube in. The nurse examined it for me and said she didn't think the doctor would have a problem with it, but she would be sure to verify during rounds. It turns out they are only concerned with green spit up (which means GET YOUR CHILD TO THE ER IMMEDIATELY) or if the yellow comes up a lot. Holding my breath this is our only yellow spit up of the day (it was!).
We had a lot of visitors that morning. Dr Dobak (my high risk doctor) came by to see how little Liam turned out. He was beaming when he saw the little guy we got to know on the ultrasound wide awake and enjoying life. It must be so rewarding for doctors to see "their" babies pull through. We also had a visit from the hospital chaplain and my friend's father-in-law that makes rounds from a local church. They both were wishing us well and were so thrilled Liam was progressing. He was very socialable that morning, like he knew he had to show off a little for the on-lookers.
By mid-morning we got word that Liam was "too healthy for his little private room" as his pediatrician said in her Icelandic accent. There's another baby that's much sicker who needs the room. Oh well! It was great while it lasted! We loved the privacy, getting to spread out all our gear, having lights off when we wanted. Poor Liam got spoiled- time to make the move kid. We're still in Level 3 (reminder- Level 1 means you're almost out the door to go home) so the move doesn't mean anything at this point, just another baby needed more privacy than he did (since his belly's now all put back together).
I didn't get to see Liam for the rest of the morning because they were doing a procedure in the Level 3 area on another baby so they needed the environment sterile, meaning no visitors can come in until they're done. It's a little frustrating when that happens because we want to be with our babies so badly, but of course you understand why there has to be a delay. This procedure was going to take a few hours so luckily my mom and aunt were coming in town early so I went to lunch with them! The day nurse called me when the procedure was done so I knew when I could go back up (she's so great to me like that!).
There had been some buzz during the day about possibly getting to breastfeed on Wednesday, but I didn't want to get my hopes up in case it didn't happen. While I was at lunch, surgery did their rounds and the surgeon on shift that day is quite liberal and wanted to bump up Liam's feedings by 5 ccs every feed and have me breastfeeding right away. Our nurse has seen a lot of gastro babies come through the NICU and she suggested to me to go up every other feed and wait until Wednesday to breastfeed. She didn't want Liam to get pushed too much and then have a setback. I totally agreed with her plan of action, but it was nice to know surgery wasn't the ones holding us back now.
I had a brief meeting with the lactation consultant about how I was doing pumping and how I could best get ready for breastfeeding the next day. We set an appointment time for 11am Wednesday to try Liam's first breastfeeding, bedside. She also quizzed me about what classes we had done, if things were ready at home, and if we had the car seat sorted. She was making it sound like we needed to prep this week and next week because we could be getting home that soon. I told her I hadn't wanted to think about prepping to go home yet until I was more sure about when it was going to happen. I mean, Liam had only been eating for 24 hours, what if something were still to go wrong? She said, what if it were to go right? You don't want to hold up getting your baby home (good point). We have to take a Discharge Class for NICU babies- Liam actually does come with an instruction book!! The class is more for parents with preemies or those going home with medical equipment, but it's also helpful for first-time parents of newborns (Steve) or those who need a refresher (me!). It was also suggested to take an infant CPR course too (which anyone with children- or anyone who keeps your children- should absolutely take). There was so much to do!!
Mom came up after lunch and finally got to hold Liam. The only other visit she had was the day of his surgery so he was definitely in a better mood this day! After that, it was time to head to Daphne for my nephew's first birthday party! Riley was waiting for me at our house so we had a quick moment to get the birthday boy some presents before it was time to head over to Jeff and Leah's for dinner and cake. They asked for us not to bother with toys really since Jax has quite a few already. So Riley decided Jax needed some books and he should get Riley's favorites- The Foot Book and Hop on Pop. There was also a Happy Birthday book by Dr. Seuss so he threw that in too. Jeff and Leah grilled burgers for us and both sides of the family (including the visiting Aussie branch) stopped by to celebrate. Jax had his own little cake to plow through, but he was not too sure about playing with his food (Leah's taught him such great table manners!). He wasn't even sure about the icing they tried to give him. It reminded me of Riley's smash cake- he just didn't know quite what to do with it until one of the day care ladies took his hand through the cake. Then he had a blast mushing it up- some even ended up on the back of his head somehow! The ladies had to strip him down and scrub him up in the sink- they were so great about making his birthday special at St Pius, so glad I got to slip out of work to see it! Jax and Riley had a blast playing together. They really respond to each other and Jax won't let Riley out of his sight (and Riley eats that up!).
Pretty soon, it was time for me and Steve to head back to Pensacola for the night feeding. I couldn't wait for Steve to see Liam's new set up and hear about how great he was doing. Daddy was very impressed and was glad to get a good visit in to Liam before heading back for another day of work. Liam is up to 7 lbs 10 oz now (born at 6 lbs 8 oz back on 27 Jan). He had some smears of poop in his diaper during the day which was an encouraging sign because they discontinued suppositories after the big diaper that morning, just to see what he could push out on his own.
Up next- breastfeeding!! (Wednesday’s update will have to wait, but so I don’t keep you in suspense- breastfeeding was a success and there’s talk that next week looks very probable for us to go home, but to still be wary setbacks can still occur).
TUESDAY-
First of all- I know you're dying of suspense- yes, he pooped!! He shot out the suppository as soon as the day nurse put it in yesterday and promptly followed it up with a sizable poo Tuesday. Everyone was terribly impressed.
Bottle-feeding went extremely well on Tuesday too. He's taking bottles like he's done it the whole time. I think he's just thankful to be fed, he doesn't want to fuss and mess it up! I got nervous first thing in the morning because when I was wiping off what I thought was extra milk from Liam's chin, I noticed his shirt was wet as well as his blanket. Once I got to changing his clothes and bedding, I saw it wasn't just spit up, but it was a bright yellow, like what had been coming up in his NG tube yesterday. My heart sank thinking we were already experiencing a set back and they would stop feedings and put the tube in. The nurse examined it for me and said she didn't think the doctor would have a problem with it, but she would be sure to verify during rounds. It turns out they are only concerned with green spit up (which means GET YOUR CHILD TO THE ER IMMEDIATELY) or if the yellow comes up a lot. Holding my breath this is our only yellow spit up of the day (it was!).
We had a lot of visitors that morning. Dr Dobak (my high risk doctor) came by to see how little Liam turned out. He was beaming when he saw the little guy we got to know on the ultrasound wide awake and enjoying life. It must be so rewarding for doctors to see "their" babies pull through. We also had a visit from the hospital chaplain and my friend's father-in-law that makes rounds from a local church. They both were wishing us well and were so thrilled Liam was progressing. He was very socialable that morning, like he knew he had to show off a little for the on-lookers.
By mid-morning we got word that Liam was "too healthy for his little private room" as his pediatrician said in her Icelandic accent. There's another baby that's much sicker who needs the room. Oh well! It was great while it lasted! We loved the privacy, getting to spread out all our gear, having lights off when we wanted. Poor Liam got spoiled- time to make the move kid. We're still in Level 3 (reminder- Level 1 means you're almost out the door to go home) so the move doesn't mean anything at this point, just another baby needed more privacy than he did (since his belly's now all put back together).
I didn't get to see Liam for the rest of the morning because they were doing a procedure in the Level 3 area on another baby so they needed the environment sterile, meaning no visitors can come in until they're done. It's a little frustrating when that happens because we want to be with our babies so badly, but of course you understand why there has to be a delay. This procedure was going to take a few hours so luckily my mom and aunt were coming in town early so I went to lunch with them! The day nurse called me when the procedure was done so I knew when I could go back up (she's so great to me like that!).
There had been some buzz during the day about possibly getting to breastfeed on Wednesday, but I didn't want to get my hopes up in case it didn't happen. While I was at lunch, surgery did their rounds and the surgeon on shift that day is quite liberal and wanted to bump up Liam's feedings by 5 ccs every feed and have me breastfeeding right away. Our nurse has seen a lot of gastro babies come through the NICU and she suggested to me to go up every other feed and wait until Wednesday to breastfeed. She didn't want Liam to get pushed too much and then have a setback. I totally agreed with her plan of action, but it was nice to know surgery wasn't the ones holding us back now.
I had a brief meeting with the lactation consultant about how I was doing pumping and how I could best get ready for breastfeeding the next day. We set an appointment time for 11am Wednesday to try Liam's first breastfeeding, bedside. She also quizzed me about what classes we had done, if things were ready at home, and if we had the car seat sorted. She was making it sound like we needed to prep this week and next week because we could be getting home that soon. I told her I hadn't wanted to think about prepping to go home yet until I was more sure about when it was going to happen. I mean, Liam had only been eating for 24 hours, what if something were still to go wrong? She said, what if it were to go right? You don't want to hold up getting your baby home (good point). We have to take a Discharge Class for NICU babies- Liam actually does come with an instruction book!! The class is more for parents with preemies or those going home with medical equipment, but it's also helpful for first-time parents of newborns (Steve) or those who need a refresher (me!). It was also suggested to take an infant CPR course too (which anyone with children- or anyone who keeps your children- should absolutely take). There was so much to do!!
Mom came up after lunch and finally got to hold Liam. The only other visit she had was the day of his surgery so he was definitely in a better mood this day! After that, it was time to head to Daphne for my nephew's first birthday party! Riley was waiting for me at our house so we had a quick moment to get the birthday boy some presents before it was time to head over to Jeff and Leah's for dinner and cake. They asked for us not to bother with toys really since Jax has quite a few already. So Riley decided Jax needed some books and he should get Riley's favorites- The Foot Book and Hop on Pop. There was also a Happy Birthday book by Dr. Seuss so he threw that in too. Jeff and Leah grilled burgers for us and both sides of the family (including the visiting Aussie branch) stopped by to celebrate. Jax had his own little cake to plow through, but he was not too sure about playing with his food (Leah's taught him such great table manners!). He wasn't even sure about the icing they tried to give him. It reminded me of Riley's smash cake- he just didn't know quite what to do with it until one of the day care ladies took his hand through the cake. Then he had a blast mushing it up- some even ended up on the back of his head somehow! The ladies had to strip him down and scrub him up in the sink- they were so great about making his birthday special at St Pius, so glad I got to slip out of work to see it! Jax and Riley had a blast playing together. They really respond to each other and Jax won't let Riley out of his sight (and Riley eats that up!).
Pretty soon, it was time for me and Steve to head back to Pensacola for the night feeding. I couldn't wait for Steve to see Liam's new set up and hear about how great he was doing. Daddy was very impressed and was glad to get a good visit in to Liam before heading back for another day of work. Liam is up to 7 lbs 10 oz now (born at 6 lbs 8 oz back on 27 Jan). He had some smears of poop in his diaper during the day which was an encouraging sign because they discontinued suppositories after the big diaper that morning, just to see what he could push out on his own.
Up next- breastfeeding!! (Wednesday’s update will have to wait, but so I don’t keep you in suspense- breastfeeding was a success and there’s talk that next week looks very probable for us to go home, but to still be wary setbacks can still occur).
Monday, February 14, 2011
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. :)
...
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. :)
Sunday, February 13, 2011
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.
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.
Saturday, February 12, 2011
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).
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).
Friday, February 11, 2011
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...
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...
Thursday, February 10, 2011
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...
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...
Wednesday, February 9, 2011
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...
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...
Tuesday, February 8, 2011
... 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!
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!
Monday, February 7, 2011
This Baby is Definitely Half Aussie!
Today was my first day without having Steve with me and I got through it pretty well! The days go by so fast anyway going in and out of NICU. Liam and I had a quiet start to the morning since he was so peacefully sleeping during first visitation. I spoke with the doctor and nurse about what we should do about this pooping thing. We all agree since he was pooping before surgery and now he's only on IV fluids, he probably doesn't have anything left to poop out! They've tried to stimulate his bootie (poor guy) with suppositories and rectal temps to no avail. The dr said she would talk to the surgeon (she has to ok the bowels are ready for feeds). Steve and I decided tonight if the dr doesn't get an answer we will request a chat with the surgeon to see if we can find some middle ground. Hopefully tomorrow we'll get some kind of news!
After the first break I got to spend some amazing bonding time with Liam doing what's called Kangaroo Care Therapy. It's skin-on-skin cuddling to give babies and mommas the closeness they need for bonding but miss out on (especially if they're stuck in a NICU and not breastfeeding). So I wore a button-down shirt and had a soft, squishy blanket I had gotten at a baby shower and the nurse got Liam organized high on my chest under the blanket. He sat for the longest time with his eyes open just enjoying. He was close enough to really hug and kiss on his head and nuzzle his cheeks. At one point, I think he realized how close he was to food and tried to take a nose dive down to where lunch was. I felt like I was wrestling a piglet trying to get him to stay up and away until we have the go ahead. It was so hard to do when I know he wants to eat so bad! He eventually fell asleep and we accidentally stayed past visiting hours. We're tucked away in a private room and we just inconspicuous enough that the nurse forgot to come get him from me and put him back in his bed. We loved the extra time we got though until I could catch one nurse's eye to help me out (I didn't want to get in trouble for over-staying!). So the little Aussie baby and I had a fabulous Kanagroo session. Pics to come!
It only got frustrating during one part of my after lunch visit when Liam was crying because he was obviously so hungry (couldn't get enough of pacie but wasn't satisfied with pacie so he kept trying to find something else to put in his mouth- his hand, a blanket, anything)! I was so sad because not only can I not feed him, but I can't even pick him up on my own to soothe him- I have to have a nurse to do that. :( I was able to take his mind off the hunger by showing him more pics of Ri on my iPhone. This time I was able to video Liam looking at the pics of Ri. He stares so intently and coos a bit, and then he lets me know when he's seen enough and it's time to change pictures- so bossy already! I showed Ri the video of his brother looking at his pics and he really thought it was neat that Liam liked him already. Ri had some questions about the different things taped to Liam but was never put off by them. He was just curious about what all everything did. I hope to do more videos like that now that Liam is off the stronger pain meds and is more alert. I think it would help with their bonding while they can't see each other.
The rest of the day went pretty normal to schedule. Sheryl and Mal brought Riley over after school. Ri and I hung out, played, and did homework while they went to see Liam. We all ate dinner (made by ADIIs from UWF!) and then Riley and I played more- you guessed it- Monopoly! When it was about time for Ri to head back to Daphne for bed, Steve got in from working and had a quick wrestle and visit before Ri left. Steve and I went up for the night visit and washed Liam down before Daddy got in a great cuddle session before calling it a night and driving back to Daphne.
All in all a decent day. Hoping the dr has good news for me tomorrow!
After the first break I got to spend some amazing bonding time with Liam doing what's called Kangaroo Care Therapy. It's skin-on-skin cuddling to give babies and mommas the closeness they need for bonding but miss out on (especially if they're stuck in a NICU and not breastfeeding). So I wore a button-down shirt and had a soft, squishy blanket I had gotten at a baby shower and the nurse got Liam organized high on my chest under the blanket. He sat for the longest time with his eyes open just enjoying. He was close enough to really hug and kiss on his head and nuzzle his cheeks. At one point, I think he realized how close he was to food and tried to take a nose dive down to where lunch was. I felt like I was wrestling a piglet trying to get him to stay up and away until we have the go ahead. It was so hard to do when I know he wants to eat so bad! He eventually fell asleep and we accidentally stayed past visiting hours. We're tucked away in a private room and we just inconspicuous enough that the nurse forgot to come get him from me and put him back in his bed. We loved the extra time we got though until I could catch one nurse's eye to help me out (I didn't want to get in trouble for over-staying!). So the little Aussie baby and I had a fabulous Kanagroo session. Pics to come!
It only got frustrating during one part of my after lunch visit when Liam was crying because he was obviously so hungry (couldn't get enough of pacie but wasn't satisfied with pacie so he kept trying to find something else to put in his mouth- his hand, a blanket, anything)! I was so sad because not only can I not feed him, but I can't even pick him up on my own to soothe him- I have to have a nurse to do that. :( I was able to take his mind off the hunger by showing him more pics of Ri on my iPhone. This time I was able to video Liam looking at the pics of Ri. He stares so intently and coos a bit, and then he lets me know when he's seen enough and it's time to change pictures- so bossy already! I showed Ri the video of his brother looking at his pics and he really thought it was neat that Liam liked him already. Ri had some questions about the different things taped to Liam but was never put off by them. He was just curious about what all everything did. I hope to do more videos like that now that Liam is off the stronger pain meds and is more alert. I think it would help with their bonding while they can't see each other.
The rest of the day went pretty normal to schedule. Sheryl and Mal brought Riley over after school. Ri and I hung out, played, and did homework while they went to see Liam. We all ate dinner (made by ADIIs from UWF!) and then Riley and I played more- you guessed it- Monopoly! When it was about time for Ri to head back to Daphne for bed, Steve got in from working and had a quick wrestle and visit before Ri left. Steve and I went up for the night visit and washed Liam down before Daddy got in a great cuddle session before calling it a night and driving back to Daphne.
All in all a decent day. Hoping the dr has good news for me tomorrow!
Sunday, February 6, 2011
Super (Bowl) Sunday!
What a great way to end the weekend!! Went up and held Liam for the morning. He's been on the stronger pain meds since 8 am yesterday. He's just had a few doses of Tylenol throughout the past day and is tolerating that well. We all pretty much have come to the conclusion that he's fussing more because he's hungry now than in pain. I think he's just getting doses when the surgeon comes around to feel his tummy and check his incision. Other than that he's feeling great! He was so much more alert this morning so it was fun getting to finally know some of his personality! He had a great time listening to his music on my iPhone (Renee & Jeremy- "It's a Big World"- a must have!) and I showed him a ton of pictures of Riley. He was so interested in the pictures, really looking intently at the photos. Thinking he needs a Shuffle and a digital photo frame in his bed!
No more poopy diapers since yesterday, but drainage is pretty non-existent and he's wrapping up his antibiotics tomorrow. I asked about starting Kangaroo Therapy (skin-on-skin cuddle time) soon to increase bonding. His attending doctor said she saw no problem with it and we could probably start tomorrow!! Liam would get unwrapped and get to snuggle up to my chest under a blanket- I just need to keep him away from the snack he so desperately wants!! (See pic with his mouth open- Feed Me! Should be the caption. The other picture is how I found him in the AM- I Don't Do Mornings)
After the morning visit with Liam, we got to visit with my brother Jeff, sis-in-law Leah, and their son Jax (can't believe he's a year old next week!). They drove over to get a tour of the RMD House from Riley and then we all went to breakfast. It was great to visit with people from "the outside"!
After getting our tummies full, Steve, Riley, and I sat down for another round of Monopoly (yes, Riley wanted to play AGAIN). And the grown-ups lost AGAIN. Is Riley the next Donald Trump (but with better hair and hopefully better choice in women)? About that time, Steve's parents came into town and Steve and his dad went up to the NICU while Nana stayed back to entertain Riley and I got a much-needed nap. Poor Nana ran the gamit of various outdoor sports (basketball, soccer, volleyball...) until it was time for some Super Bowl goody-making! One of the volunteers at the house has taken a shine to Riley and offered to make Rice Krispie treats with him for the Super Bowl. He was so excited and even wrote a note (Made By Riley) just to be sure everyone knew he contributed to the spread.
And what a spread it was! The volunteers decorated the common areas (living room and huuuuge family-style dining room) with streamers, balloons, signs, and hats for each team (complete with cheeseheads!). They had the "house divided" Packer fans watching one TV, Steeler fans watching the other. The goodies included wings, chili, meatballs, sliders, pasta salad, Rice Krispie Treats, and tooons of popcorn with different flavor sprinkles to put on top. The place got packed and it was fun to hear the different sides of the common rooms cheer on the teams.
We got Riley packed up and out the door at half time to get ready for the school week. (Forgot to mention earlier Sheryl and I went up to the NICU just before the game to get some time in with Liam. He had just been cuddled by Steve and Mal so we just enjoyed watching him sleep contently). Steve and I got up to visit Liam again in the evening (but I kept tabs on the game via iPhone- thank goodness for technology!).
So glad we went because we had a great night nurse that waited for us so we could do some hands-on with Liam! We got to do a sponge bath with him and he tolerated things pretty well. He even got a little shampoo and smelled so yummy! His incision site has healed so well- no seepage since the first day post-op, so we were cleared to take off his big bandage on his tummy. The tape had been irritating his skin so it was nice to get one more thing off of him. All he has left are 2-3 little pieces of tape over the stitches.
After bath time he got all swaddled up and got a great cuddle from Daddy. Steve starts back to work Monday so he'll miss the daytime visits from here on out. We played his music for him again and then had to put him down for the night. He was soooo content and peaceful, hopefully he gets lots of rest tonight and keeps on the road to recovery.
It was weird saying goodbye to Steve and coming back to the RMD House by myself after such a busy weekend. He's been here with me the whole time and has been even more supportive and more loving than I could have ever imagined- I got spoiled having him with me for the past 10 days. He waited on me hand and foot all hours of the day and night, he got me healthy and moving again, and has been spending quality time with Riley, as he always does, all while being ever-present in the NICU as well. I couldn't have asked for a better partner to go through this with.
Saturday, February 5, 2011
A Balancing Act
Today was our first big balancing act between spending time with Riley and getting up to the NICU to see Liam.
We started the morning with driving from Pensacola to Daphne for Riley's basketball game early in the morning. After a quick stop by the house for some items, we were back in Pensacola again and I got to go up and see Liam first. I hadn't seen him in 12 hours! :( Steve stayed back with Riley at the Ronald McDonald House playing games.
The morning visit was good. Another little poopy diaper overnight! Still not quite enough to start feeds, but encouraging! His gastric output is way down, but still a little green (again, a step in the right direction!). The night nurse had to give him a few doses of pain reliever when she couldn't console him. I think he might be more hungry than in pain, but that's just me. He had another dose at 8 am but nothing the rest of the day shift. I got to hold him for a long time and got so comfy that I fell asleep. A nurse woke me up- ooops!! After that I cruised on my iPhone instead of staring at my precious baby boy's sleeping face so I could stay awake. A picture I need to upload from today was taken when I was getting Liam back into his bed. The nurse was connecting all of his leads and tubes again and I noticed Liam slooowly inching the blanket up his face with his hands to where he nearly covered up his eyes. It was almost like he was trying to disappear so she wouldn't mess with him. Too funny- sorry buddy!
With Liam-time done, it was now time to move back to Riley-time. I swapped with Steve and his parents and went back to the RMD House with Riley to play Monopoly (his new favorite game!) After they were donw visiting Liam, we all went to Five Guys (that place was hoppin!) and then used free passes from the RMD House to go to Fun Zone. Fun Zone has inflatables, a rock wall, a batting cage, swing rope, trampoline, a log roll, and an arcade. Riley was in heaven!! What an awesome gift for the owner to donate "anytime passes" for kids to run and play and burn off energy on a chilly day like today. Just what these parents needed!!
Then it was Liam-time again. Steve's mum and I went to the NICU and Sheryl got to hold Liam for nearly an hour (since they ran out of time on their earlier visit). He just loves being held!
Then back to Riley-time. We made it through a very eventful week and decided we all deserved to have a fantastic meal out- away from the hospital, away from the RMD House. We went to Melting Pot to celebrate Riley being a big brother and Liam coming through his first week so well! Riley loooved cooking up our food for us in the fondue pots. He felt like a little chef, I think.
Bellies full, Steve's parents headed back to Daphne, Steve took the evening visiting hours with Liam, and I got Riley into bed at the RMD House. Steve reports that no more diapers to celebrate this evening, but he hasn't had pain meds since the 8 am dose so he's doing great!!
First day of running back and forth worked out pretty well. Hopefully we don't have too many weekends like this! I would love to have all of my boys under one roof, enjoying each other. We're getting there, one week at a time!
PS- This Ronald McDonald House is so amazing! The amount of nice things donated to make our stay so much more welcoming and entertaining has been unreal! And there's always groups coming in to cook dinners (which I love!). The kitchen is completely stocked with all kinds of things to eat, drink, and make, but the volunteers have kept us so well-fed, I have yet to cook anything! Today a group of high school kids came in and had a bake off. Tons of cakes, brownies, cookies, etc made to see who's came out the best. Then tonight a church came in and put on a huge fiesta night. I felt a little bad we didn't stay because they went through such effort- complete taco bar, spanish rice, sides, and even decorations! The outpouring of support from the community and donors has really got me thinking about how we can give back once we get home...
We started the morning with driving from Pensacola to Daphne for Riley's basketball game early in the morning. After a quick stop by the house for some items, we were back in Pensacola again and I got to go up and see Liam first. I hadn't seen him in 12 hours! :( Steve stayed back with Riley at the Ronald McDonald House playing games.
The morning visit was good. Another little poopy diaper overnight! Still not quite enough to start feeds, but encouraging! His gastric output is way down, but still a little green (again, a step in the right direction!). The night nurse had to give him a few doses of pain reliever when she couldn't console him. I think he might be more hungry than in pain, but that's just me. He had another dose at 8 am but nothing the rest of the day shift. I got to hold him for a long time and got so comfy that I fell asleep. A nurse woke me up- ooops!! After that I cruised on my iPhone instead of staring at my precious baby boy's sleeping face so I could stay awake. A picture I need to upload from today was taken when I was getting Liam back into his bed. The nurse was connecting all of his leads and tubes again and I noticed Liam slooowly inching the blanket up his face with his hands to where he nearly covered up his eyes. It was almost like he was trying to disappear so she wouldn't mess with him. Too funny- sorry buddy!
With Liam-time done, it was now time to move back to Riley-time. I swapped with Steve and his parents and went back to the RMD House with Riley to play Monopoly (his new favorite game!) After they were donw visiting Liam, we all went to Five Guys (that place was hoppin!) and then used free passes from the RMD House to go to Fun Zone. Fun Zone has inflatables, a rock wall, a batting cage, swing rope, trampoline, a log roll, and an arcade. Riley was in heaven!! What an awesome gift for the owner to donate "anytime passes" for kids to run and play and burn off energy on a chilly day like today. Just what these parents needed!!
Then it was Liam-time again. Steve's mum and I went to the NICU and Sheryl got to hold Liam for nearly an hour (since they ran out of time on their earlier visit). He just loves being held!
Then back to Riley-time. We made it through a very eventful week and decided we all deserved to have a fantastic meal out- away from the hospital, away from the RMD House. We went to Melting Pot to celebrate Riley being a big brother and Liam coming through his first week so well! Riley loooved cooking up our food for us in the fondue pots. He felt like a little chef, I think.
Bellies full, Steve's parents headed back to Daphne, Steve took the evening visiting hours with Liam, and I got Riley into bed at the RMD House. Steve reports that no more diapers to celebrate this evening, but he hasn't had pain meds since the 8 am dose so he's doing great!!
First day of running back and forth worked out pretty well. Hopefully we don't have too many weekends like this! I would love to have all of my boys under one roof, enjoying each other. We're getting there, one week at a time!
PS- This Ronald McDonald House is so amazing! The amount of nice things donated to make our stay so much more welcoming and entertaining has been unreal! And there's always groups coming in to cook dinners (which I love!). The kitchen is completely stocked with all kinds of things to eat, drink, and make, but the volunteers have kept us so well-fed, I have yet to cook anything! Today a group of high school kids came in and had a bake off. Tons of cakes, brownies, cookies, etc made to see who's came out the best. Then tonight a church came in and put on a huge fiesta night. I felt a little bad we didn't stay because they went through such effort- complete taco bar, spanish rice, sides, and even decorations! The outpouring of support from the community and donors has really got me thinking about how we can give back once we get home...
Friday, February 4, 2011
TGIAGF!! (Thank Goodness it's a Great Friday!)
The day started off much better today. Had a great phone call from Riley before he left for school. He sounded happy so that put my mind at ease. Little did he know that Steve's parents were packing him a suitcase so he could stay all weekend with us at the Ronald McDonald House. He figured it out later in the evening and was thrilled. There was something so right about looking over in the other bed and seeing my first born all snuggled up in the "nest" Steve made for him, sleeping peacefully.
Liam had a great day as well! The ten o'clock break in the morning seems to be his bewitching hour, when he starts acting up. Today, he decided he's had it with a tube down his throat and took it upon himself to remove it. The nurse decided to overrule that course of treatment and put it down his nose instead and tapes it securely to the side of his face. Take THAT Liam. :)
Lots of holding and snuggling again today. I got to help with temperature taking, changing his diaper, wiping him down, and putting lotion on him. The best news of the day- there was one little tiny poo in his diaper!! THE POO HAS STARTED! It's not enough to signal it's time to feed him yet, but it's a good sign that ti's just a matter of time now. Yay!!! We also have to wait for his gastric juices that are suctioned from his stomach (via the aforementioned tube) has to run clear or stop coming up in general. I figured out at lunch today the best way to describe what comes up- it looks like pesto. I will not be ordering any chicken and pesto dishes for a while...
We had a good run of no pain meds- another victory! He went 19 hours before the nurse had to give him some. I think some nurses might try harder than others to calm the babies before giving pain meds. I'd really like him off of them because he's more alert and interactive. I just think it's weird one nurse can get him to go her whole shift with nothing and another had to give it to him 3 times. Oh well. At least we have that patient nurse back on Tuesday. They might try starting him on Tylenol instead of the pain meds he's on to get him weaned down.
His weight has been good- he's been fluctuating since birth though, but it's to be expected. He started at 6 lbs 8 oz, dropped to just above 6 lbs, then after surgery he was up to 6 lbs 13 oz (but that was mostly fluids they fed him), and now he's down to 6 lbs 9 oz. I expect him to lose weight until he can feed. Hopefully next week!! And there's talk he'll be ready for a real crib soon!
He's looking more like a real baby every day. Just a Pic line left in his head (the other 2 IVs are out), he still has all of his leads but he doesn't have to wear the blood pressure cuff all the time anymore since he's off dopamine. And he's getting swaddled (and loves it!) so he's like a little baby bundle now! Pretty soon we'll be in real clothes, a real bed- we're on the right track!
Much better day...
Liam had a great day as well! The ten o'clock break in the morning seems to be his bewitching hour, when he starts acting up. Today, he decided he's had it with a tube down his throat and took it upon himself to remove it. The nurse decided to overrule that course of treatment and put it down his nose instead and tapes it securely to the side of his face. Take THAT Liam. :)
Lots of holding and snuggling again today. I got to help with temperature taking, changing his diaper, wiping him down, and putting lotion on him. The best news of the day- there was one little tiny poo in his diaper!! THE POO HAS STARTED! It's not enough to signal it's time to feed him yet, but it's a good sign that ti's just a matter of time now. Yay!!! We also have to wait for his gastric juices that are suctioned from his stomach (via the aforementioned tube) has to run clear or stop coming up in general. I figured out at lunch today the best way to describe what comes up- it looks like pesto. I will not be ordering any chicken and pesto dishes for a while...
We had a good run of no pain meds- another victory! He went 19 hours before the nurse had to give him some. I think some nurses might try harder than others to calm the babies before giving pain meds. I'd really like him off of them because he's more alert and interactive. I just think it's weird one nurse can get him to go her whole shift with nothing and another had to give it to him 3 times. Oh well. At least we have that patient nurse back on Tuesday. They might try starting him on Tylenol instead of the pain meds he's on to get him weaned down.
His weight has been good- he's been fluctuating since birth though, but it's to be expected. He started at 6 lbs 8 oz, dropped to just above 6 lbs, then after surgery he was up to 6 lbs 13 oz (but that was mostly fluids they fed him), and now he's down to 6 lbs 9 oz. I expect him to lose weight until he can feed. Hopefully next week!! And there's talk he'll be ready for a real crib soon!
He's looking more like a real baby every day. Just a Pic line left in his head (the other 2 IVs are out), he still has all of his leads but he doesn't have to wear the blood pressure cuff all the time anymore since he's off dopamine. And he's getting swaddled (and loves it!) so he's like a little baby bundle now! Pretty soon we'll be in real clothes, a real bed- we're on the right track!
Much better day...
Thursday, February 3, 2011
What a Rollercoaster Kind of Day!
And We're Up:
Liam had a decent night considering he just got sewn up. He was getting worked off of the pain meds by morning and was going on his fifth hour of no meds when we had our morning visit.
And We're Down:
While we had our mid-morning break when the NICU is closed (10a-11a), Liam got fussy enough that the nurse decided he had gone long enough and gave him his usual pain meds. Then he got so relaxed he forgot to breathe. The nurse was able to bring him around with some oxygen and suction so he didn't need to be bagged or intubated, thank goodness. We were told just as soon as we were checking back in. It really freaked me out because early that morning there had been a Code Blue in a different part of the NICU (or in Labor & Delivery- we couldn't figure out which one). And to think that Liam had a scare- well that was tough to think about.
And We're Up:
After the lunchtime break, we went back to visit Liam and I GOT TO CUDDLE HIM!! Like REALLY HOLD HIM IN MY LAP!! He was still attached to his various wires and tubes, but he was in my arms and we were in a big comfy chair and we loved it! His heart rate calmed and he settled into nuzzling with me. I could have fallen asleep and stayed there forever. The nurse was happy to see he tolerated the holding well because some babies that weren't able to be picked up early on have a hard time adjusting to someone touching them. He also tolerated swaddling after being pretty much laying out in the open (he had a bed warmer so don't picture him chilled or anything) due to his silo preventing swaddling from happening sooner. I didn't want to put him back when it was time to go.
Continuing the Up:
Steve and I drove home (me for the first time since getting admitted last week) to see Riley and take him to basketball pictures. We had a great afternoon playing and checking out what he's been up to.
And We're Down:
After basketball photos, we had dinner around the table, did bedtime routine and then the tears started. Riley didn't want us to leave. He had managed so well all week being the "leaver", but he couldn't handle being the one left. It broke my heart to have to make a choice for the first time- I wanted my little guy happy and sleeping but I wanted to get to my baby that had stopped breathing earlier that day (and who I would also get to hold again that night!). It was terrible and hard and I think I cried all the way down Hwy 90 to Hwy 59 and onto the interstate. I was worried I can't ever go home again unless I'm staying the night because it was too hard on him. :(
And We're Up:
Poppa Mal and Nana Sheryl worked their grandparent magic on Riley for us and got him calmed down and settled. Nana even told Riley stories about SteveDaddy growing up (can't wait to hear those!) and I think she might have even caught a few Zs next to Ri in his bed. I'm sure he was in heaven. It made it easier to leave knowing his was in loving hands.
And when we got back to the hospital, Steve got to hold Liam for the first time and loved every second of it (as did Liam). We even got his eyes open checking us out a few times. I got to hold him one more time before visiting hours were over.
It was a crazy day of ups and downs- I hope we don't have too many of those or momma will need to pump and dump after I polish off some Bailey's to calm my nerves. :) I resisted tonight though...
Wednesday, February 2, 2011
Fix 'Em Up Day!
Today was another milestone- a pretty big one- Surgery Day!!
My mom got to come over today to be with me since Steve had to go to Mobile for a meeting with the Navy. We spent most of the morning just enjoying Liam, going over with Mom all of the machines and stuff stuck to him, and discussing with the nurse and doctor how today was going to go.
Surgery was scheduled for 2:00 but they called for him a little later than expected so we got in some great loves and kisses. I was soooo thankful he was calm and relaxed before surgery. It would have been so hard to pass him off to go under if he was fussing. I got a little nervous the closer to surgery time- my baby was going under for the first time, how would he do?
The anesthesiologist met me in the surgical ward and really put me at ease. He discussed what he was going to do and seemed to really care about watching him carefully. Just a different kind of conversation than I had with my anesthesiologist-this guy was definitely used to working with little ones.
Steve and company arrived toward the end of Liam's surgery so he was there for when Liam woke up. After what seemed like a long wait, Dr Lewis, the pediatric surgeon, came out and said the surgery went great. She even had pictures for us. They closed up his belly in a purse-string fashion around his umbilicus. I envision his scar will be around his belly button- we'll see how it turns out! She even said he won't have to be ventilated coming out of surgery which is a huge relief!! Being on a ventilator can lead to other problems such as the baby getting lazy and letting the machine breathe for them (thus having a harder time getting off the vent) or it can lead to respiratory infections. So this was great news!!
When we got to go in and see him he was not feeling very good and was letting us know it. The nurse upped his pain meds to try to take the edge off. We held his little hands and I tried to soothe him as best I could. It would work temporarily with humming or shhhhh sounds but then he's fuss again. At one point he took time to open his eyes, made sure he was looking at me and then gave the most pitiful wail. I guess it was to make sure I knew he didn't feel good :(. I couldn't leave until he settled in better so I was thankful when the pain meds kicked in more.
Steve and I went back up tonight and the night nurse said he had another dose within 2 hours of the other one, which is acceptable, but he had been going longer prior to surgery. He was still whimpering a little in his sleep so she was discussing a drip with the doctor to keep meds in his system rather than riding a pain roller coaster all night. We'll see in the morning what they decided.
When we first got there, I had checked his feet to make sure blood flow was getting to them well enough. The pressure of the bowels being in can inhibit circulation to his legs (like last night). They looked good when we went in, but by the time we left, one was getting more purple and cold. A nurse explained it might be that he's on his side now (no more back laying needed!) and that she would keep an eye on it for us.
Other good news was that his wound had stopped seeping so everything seemed to be on the mend! Next milestone will be having his gastric juices that are sucked out from his stomach turn clear (green right now, as it has been this whole time) and we need him to poop! After that we can start feeds- maybe before the week is out.
Pray for poop! :)
Tuesday, February 1, 2011
A Day of Ups and Downs
So our day started out as an "up"! Liam had already been visited by the pediatric surgeon and his intestines had been worked in a little further- less than half an inch can be seen out the top! His belly was a little rounder from the extra parts inside, but that was to be expected. Babies look cute with round tummies!
We had a great nurse today who explained what all to expect after the surgery and then we also got to talk to the nurse practitioner of the surgeon. She explained more of how the surgery would go and estimated his surgery time to be 2pm, lasting about an hour.
After a great morning of loving on Liam, Steve and I left for lunch and I decided to stay back in the room during the early afternoon visit- I was just too exhausted and I wanted to have energy to play with Riley when he came over. Steve went up to NICU on his own and had a great talk with the pediatric surgeon who was making rounds at the same time. He feels really good about what's happening tomorrow after talking with her.
Steve's folks brought Riley over for the afternoon. They went to visit Liam while Steve and I played with Ri. Riley was so proud he had done his homework already in the car so he could play as soon as he got here! We got a good game of HORSE in before the weather turned bad. We had some quiet time in the room and then ate a great turkey and fixin's dinner before it was time for showers and stories. Steve went home with them tonight to get to a meeting at work the next day. He'll come back over when Riley's done with school on Wed.
Of course with Steve gone, I went to the NICU by myself and that's when we had a little "down". When I came in the doctor on duty happened to be assessing him so we had a good chat. We noticed his skin was paler, especially his legs, his feet were purplish again (apparently how he was when he came out) and even one of his hands were purple. Steve and I had also been watching a spot on his intestines that wasn't as pink as the rest earlier that day and the doctor noticed it too. She said she would monitor his blood flow as that was the cause of everything. The pressure of putting his intestines back in can sometimes cause strain on his vascular system causing the purple and paleness. Why did this have to happen on the one night when Steve went away? :( Of course there was nothing I could do, but I felt bad like I let Steve down when he was away because Liam was having a bad night. I know that's not the case but it still felt that way.
She ordered fluids to get the circulation back up, but she said it would make him a little chilly so poor buddy was shivering some. The nurse let me pick him up again for weight calculation and to change his bed. I got to give him lots of kisses and rubbed my cheek to his- we loved it!!! I then got to massage his feet and hands to stimulate blood flow and pile on some blankets so he was snug but not too hot.
He had a good hour of rest listening to his lullaby music and then he started getting fidgety and grimacing (of course right when I was about to leave). I tried to adjust some things to see if it would help and rub his forehead to soothe him, but he would keep squirming every so often like he couldn't get comfy. It's hard to leave him like that but my tummy was hurting because my medicine had run out so I had to get going. It stinks seeing your baby hurting and you can't do anything for him. You can tell he's just kind of over it all- already. Sometimes he doesn't like people touching him too much- I guess he's been poked and prodded enough he just wants everyone to leave him along. I hope when he gets home he lets us get in lots of cuddling and snuggles.
Hopefully after he gets through surgery tomorrow and through recovery, he'll start feeling better. Keep us in your thoughts Wed afternoon!
We had a great nurse today who explained what all to expect after the surgery and then we also got to talk to the nurse practitioner of the surgeon. She explained more of how the surgery would go and estimated his surgery time to be 2pm, lasting about an hour.
After a great morning of loving on Liam, Steve and I left for lunch and I decided to stay back in the room during the early afternoon visit- I was just too exhausted and I wanted to have energy to play with Riley when he came over. Steve went up to NICU on his own and had a great talk with the pediatric surgeon who was making rounds at the same time. He feels really good about what's happening tomorrow after talking with her.
Steve's folks brought Riley over for the afternoon. They went to visit Liam while Steve and I played with Ri. Riley was so proud he had done his homework already in the car so he could play as soon as he got here! We got a good game of HORSE in before the weather turned bad. We had some quiet time in the room and then ate a great turkey and fixin's dinner before it was time for showers and stories. Steve went home with them tonight to get to a meeting at work the next day. He'll come back over when Riley's done with school on Wed.
Of course with Steve gone, I went to the NICU by myself and that's when we had a little "down". When I came in the doctor on duty happened to be assessing him so we had a good chat. We noticed his skin was paler, especially his legs, his feet were purplish again (apparently how he was when he came out) and even one of his hands were purple. Steve and I had also been watching a spot on his intestines that wasn't as pink as the rest earlier that day and the doctor noticed it too. She said she would monitor his blood flow as that was the cause of everything. The pressure of putting his intestines back in can sometimes cause strain on his vascular system causing the purple and paleness. Why did this have to happen on the one night when Steve went away? :( Of course there was nothing I could do, but I felt bad like I let Steve down when he was away because Liam was having a bad night. I know that's not the case but it still felt that way.
She ordered fluids to get the circulation back up, but she said it would make him a little chilly so poor buddy was shivering some. The nurse let me pick him up again for weight calculation and to change his bed. I got to give him lots of kisses and rubbed my cheek to his- we loved it!!! I then got to massage his feet and hands to stimulate blood flow and pile on some blankets so he was snug but not too hot.
He had a good hour of rest listening to his lullaby music and then he started getting fidgety and grimacing (of course right when I was about to leave). I tried to adjust some things to see if it would help and rub his forehead to soothe him, but he would keep squirming every so often like he couldn't get comfy. It's hard to leave him like that but my tummy was hurting because my medicine had run out so I had to get going. It stinks seeing your baby hurting and you can't do anything for him. You can tell he's just kind of over it all- already. Sometimes he doesn't like people touching him too much- I guess he's been poked and prodded enough he just wants everyone to leave him along. I hope when he gets home he lets us get in lots of cuddling and snuggles.
Hopefully after he gets through surgery tomorrow and through recovery, he'll start feeling better. Keep us in your thoughts Wed afternoon!
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