In Like a Lion, Out Like a Lamb

This morning was a little rougher start for Liam, but nothing serious it seems so far so thank goodness!

We were greeted by Liam with a fever this morning, they weren't sure why- but it was only one temp reading so they made no adjustments yet unless it persisted.

Also, the tube down his throat to his stomach was asking up. This tube drains fluids out of the stomach via continuous suction and is collected in a small container to view the contents. Usually green (it's expected to go more clear after surgery when his system is working properly), today the fluid had blood in it. It had started in the wee hours of the morning so they repositioned the tube in case it was sucking too close to the stomach lining and gave Liam some Zantac to soothe his stomach. He got some pain meds as well to help with the irritation- he had been extra fidgety that morning- and for good reason!

A few hours later, the pediatric surgeon did her rounds and pushed more intestines back into his abdomen. At first she had pushed in quite a bit, but the nurse and doctor said the remaining intestines started turning white, indicating lack of blood flow to the external guts (bad stuff) so the brought some back out until it got pink again. The amount she got in is pretty much the same amount she had gotten in each day so we were pleased. Liam had some more pain meds because of this too. :)

After lunch (and a great nap by momma) we headed back up to NICU. Liam's fever hadn't come back since this morning so that was great news. His gastro collection container had been relatively clear through late morning, but his stomach must have gotten irritated again because the blood was back. The doctor decided to pull off the suction for tonight to give his lining a break and is just letting gravity pull out anything it can instead. I think Liam was grateful! Another dose of pain meds. It seemed like he got a lot today, but they said he can have pain meds every 2hours. Usually he doesn't need more than 2-4 per day but today was a little harder, just seemed like a lot I guess.

Lastly, Liam's trifecta of needles in his head is now complete :/ He's had his PIC line for his nutrition and dopamine, as well as an IV just in case he needs anything else quickly (currently it's not in use, just open and ready). Today they put one more in his head to add antibiotics to his regime to prep his intestines for surgery. They had to start a new line rather than use the open IV so they still had an open port if needed. The last line should come out after surgery. Liam looks like a he has a crown on his head now with all the stuff sticking out of him. Poor baby!

Riley got to come visit us at the Ronald McDonald House after school and we were so excited to see him! He looooved the house and explored all over. He found the play area out back and coaxed one of the volunteers into playing soccer and basketball with him. What a great service to have someone run around with the kids if you've had a tiring day or are recovering. He loved it! Then it was time for homework and snacks from all the goodies in the kitchen. More exploring in the playroom, got a Wii hooked up in the family room so he was content. We all got to eat dinner together before it was time for showers and PJs. We got lots of great kisses and cuddles before Steve's parents drove Riley back to Daphne for bed. Hi mum reports that Riley feel asleep in the car rather quickly and went straight up stairs when they got home and was fast asleep in no time. Whew! Makes me feel better about being over in Pensacola, away from him.

We got another great treat when we went back to the NICU tonight for bedtime- Liam was doing great! One of his favorite nurses, Megan, was on and he always opens his eyes more when she's on duty. She said no signs of fever, the suction is off so he's comfy, and no pain meds since earlier in the day. He was honestly resting comfortably all snuggled up to his lovey from my mom. Also, his intestines appeared to have dropped in further on their own during the day- not much to go now!

He fell asleep for a good while so we just sat with him and enjoyed his peacefulness. Then he gave some good stretches and was kinda of awake so we read him his bedtime stories and played his music for a while before leaving.

So glad the day ended well. Maybe tomorrow we'll get news about when he'll have surgery!

We've moved!!!

Today's big event was getting discharged from the hospital and moving down the road into the Ronald McDonald House. It's goregous! The new house has over 20 bedrooms in it (a huge improvement over the 9 they had at the old house). There's common living rooms, a huge kitchen with dining tables, tons of donated food (they said don't expect to lose weight here!), a small fitness room, kids play room, game room, computer room, outside playground, half court and putting green, as well as a nursing nook and laundry rooms! We got a room with two beds so Riley can stay with us on weekends if he wants. They all have private baths, TV, and plenty of space for clothes. The staff is very friendly and the house gets a lot of items donated for the family to enjoy (movie tickets and kids activites for example).
As nice as the house is, it was still kind of sad not going home yesterday. We're going to try out the house and see how it goes. It's SO nice being within walking distance (don't worry- Steve's still driving me!) from the hospital. I like getting up to see Liam every chance I can (between naps- still pretty tired!).

Liam is still being tough. There was a lot of waiting around yesterday because they close off his whole section if there's a procedure being done on a baby or if there's an emergency. That part is frustrating, but it's for the best.

Today Daddy got to pick up Liam when he was getting his sheets changed. He must have known it was his dad because as soon as Steve picked him up, Liam's body instantly relaxed and settled into his hands. He even tried to roll toward Steve to get a nuzzle, and it looked like he was smiling! I'm sure it was hard to put that little guy down when he just wants to be cuddled and loved. :)

His intestines continue to make progress in and blood flow still looks good so we're not losing any bowel tissue. Fingers crossed!! No set date on surgery- still Wednesday or Thursday, just depends on how much goes in between now and then. They give Liam pain meds when his bowels get moved down each time so I feel like he's always spacing out when we see him. It'll be fun to see his real personality once he's off the meds.

I asked about the meds, concerned with long term effects, etc. He's still only getting them a couple times a shift (12 hr shifts) and it's in a very small dose- just to take the edge off. He won't be resistent to pain meds in the future and it's not to delay any brain activity or progress. He should be off pain meds a little while after surgery if all goes well so we're not far away from that point.

Pictures are slow for us to upload because we're wanting to be careful about what is posted. Should be some good ones we can crop coming soon!

Day 3 of Liam

I loved getting to spend more of the day up in NICU with Liam! I felt better in the morning so I got a good shower and walked up to NICU with a wheelchair for support.

While we were up there, the nurse needed to get vitals and change out his sheets. She taught Steve how to take an axillary temp and we watched how to change his diaper around his silo. Then when the nurse changed his sheets- I GOT TO PICK LIAM UP while she swapped out bedding underneath. I WAS SO EXCITED TO HOLD HIM!! I couldn't cuddle him because he was hooked up to everything, but I loved it and he looked so content. She said I could give him a kiss on the forehead and he seemed to like that a lot.

After she got him all nuzzled back in, I noticed his feet looked a bit dry. The nurse said I was welcome to rub lotion on him, so Liam got a leg and foot massage as well as a rub down on his arms and hands. He was a bit squirmy at first- I guess lotion does feel a little weird to begin with. But after a while he didn't seem to mind too much. :)

The pediatric surgeon had been by earlier in the day and cinched his silo down about a half inch. She thinks his surgery might happen on Wednesday or Thursday next week. We're getting closer!

I must have overdone it at the start of the day, because boy did I pay for it the second half of the day. They upped my pain meds, gave me something for nausea, and I took it more slowly the rest of the day.

We went back at night for bedtime. Our friend, whose baby was in the NICU for a number of months last year, lent us a storybook she read to her baby every day. Steve and I each read a story out of the book and then play him some songs from Renee and Jeremy's album- It's a Big World. Liam loves it and if he's starting to fuss, he usually calms down once it's on. It's the same album Riley goes to sleep to every night so I'm sure Liam has heard the first few songs before (en utero!).

Day 2 of Liam

Sorry for the delay in posts- recovery and NICU visits have consumed our day! And when I get back to the room I am exhausted so I've been sleeping (doing as I'm told!).

I finally got to go to the NICU and see my baby boy by mid-morning. He has a private room in the Level 3 part of NICU. When he's on the mend he'll graduate to Level 2 and then Level 1 before being out the door! We think we're in a private room not because of being too sick, but to give him some privacy since his intestines are out. Other parents might not be ready to see something like that as most of the babies we've seen are just preemies without visible defects. I like him in there though because it's quieter and there's not as many people milling about his bed. We can spend good quality time with baby. :)

We were excited to see that his intestines had already started to drop in a good bit, so the hole wasn't too small after all! What was a little bit too small were his veins. They had a hard time getting IVs into his arm and couldn't keep them from puffing up so they had to put some lines in his head (pooh).

So he has a PIC line just above his forehead that runs internally to just above his heart. This delivers his nutrients and lipids (fats) so that he can still get "food" until he is able to be feed via mouth in a few weeks to a month. It also feeds in dopamine to keep his blood flowing well (especially into his external intestines- it's crucial those still have adequate blood flow so they don't die and have to be cut out). On his left temple is an IV for other fluids such as pain meds, antibiotics, etc.

Also stuck to the poor baby is a body temp sensor, blood pressure cuff, heart rate monitor, O2 gauge etc. There's still room for us to kiss his forehead, hold his hands and rub his feet!

Today was mainly getting oriented with protocol in the NICU and getting to love on Liam!

Introducing Liam John Ripp!!!

We arrived at Sacred Heart in Pensacola at 9:30 am to check for our big day! I got all prepped for surgery and even had a few moments to greet Riley, Steve's parents, my mom and brother. We were supposed to start surgery at 11:30a but the pediatric surgeon was tied up in another procedure so we lost our slot and had to wait to get worked back into the schedule. There were SO many babies delivered that day!

Finally got back to the OR at 12:30p and started the surgery prep. The room was a little intimidating (especially since Steve had to wait outside until I was done being prepped). A lot of equipment, a lot of people, etc. Got a spinal block and epidural, laid down and was draped- ready!! Steve sat with me and was able to stand up to get some pics over the drape- and he didn't pass out!

When we heard the first cries of Liam John Ripp I was overcome with relief. His cries sounded so strong and healthy. I could not believe he had come this far and was doing so well! He was born at 1:18pm weighing 6 lbs 8 oz and measuring 19.5in long. His APGAR scores were 7 and 8. The NICU team and pediatric surgeon immediately assessed his intestines. It turns out the small and large intestines AND his stomach were all out. The peds surgeon said the whole in his ab wall was small which would make it easier to pull close, but it could prevent the guts from going back in or it could cut off blood supply, causing tissue to die. So far everything is a healthy pink and his guts have already made huge steps going in by itself!

Liam has a head full of blondish hair w a bit of reddish brown in it. He has blue eyes (for now but they probably won't change), and fat rolls on his arms and legs- AWESOME!

Once his intestines got bagged in the plastic silo that will suspend above his bed to feed the guys back into his tummy, they put him in an isolette for transport. They stopped long enough for me to reach in and hold his hand and rub his cheek. He seemed content enough. Steve walked out with Liam while I got stitched back up and prepped for recovery. The family got to stand in the hallway between the OR and NICU where the nurses stopped long enough for everyone to get a peek and Ri to introduce himself to his little brother. Only got one picture (and Ri's eyes were closed!) before they had to whisk Liam away from NICU work.

Once I was resting in recovery, family got to come back and visit for a while. Then they took Ri to the mall to celebrate with lunch and games. While I was in recovery I got a little sad because I saw a new dad walk by holding his baby and I could hear the baby cry in the next curtain over. I'm sure part of the emotion was the drugs and experience I just had, but I got teary because I didn't have my baby to hold and hug. The nurse and Steve were great about comforting me, reminding me Liam is doing head and shoulders better than we could have imagined and that I'll get my turn soon.

We got settled into a private room but haven't actually gotten to rest with all the nurses and departments coming in and out throughout the afternoon and night. Pain was minimal with the cocktail I was on and the nurses are great. I was told I'd get to see Liam at 1am after the epidural wore off, but the night nurse made me wait until morning- BOOO.

Tried pumping to get some colostrum which has the most vitamins, etc that he needs in the beginning. Had a little luck. I'm told things are slow to start after c-section because of the drugs, but keep trying to encourage your body to make more. Liam can't have any milk until after he has some bowel movements post surgery (hopefully mid-next week). So I'm pumping and storing as my milk will be better for him than any formula out there. Your body naturally makes the combination necessary for your particular baby0 just depends on the ailment. Cool huh?

Steve got to visit Liam tonight and got some more pics for me (because I couldn't go up until I had feeling in my legs- even though I was going up via wheelchair). He got the low down on how baby was doing, what the machines are for, etc. We have a room to ourselves right now which is great to be on our own. We can stay there unless a more serious baby comes in. Not that Liam is serious, but some parents might be put off by seeing his guts out. The room opens to the main NICU baby room, but we have our own corner. Liam has already started pooping and peeing- AWESOME SIGN!! He'll probably stop with the pooing post op until his bowels recover. When he starts dirtying diapers again we can begin light feeds! But it's so ecouraging he's already got his piping working! Another obstacle overcome!

Long night ahead of people in and out of the room checking on me (and Steve's rollaway is quite terrible!), but we're thrilled to have closed the chapter on pregnancy and are starting the new chapter of getting Liam healthy and home.

More tomorrow!


Liam John Ripp joined us at 1:18p on 27 Jan 2011. He weighed 6 lb 8 oz!
Intestines look really healthy, he's resting in NICU and mom in her room. Csection went well. More to come later

Last Doctor Appointment!

Today was our final High Risk doctor appointment!! Everything checked out fine- all of his organs are performing well, his intestines have held at 20mm for the past 3 weeks as well!!

He's is estimated at 6.5 lbs and is in the 44th percentile!!! This is better than we could have hoped for!! He's right on track and never bottomed out in weight gain (so the intestines appear to befunctioning well),

His NST went well too. He behaved for the most part, kicked the monitor a few times just to show he can. Everyone's excited for Thursday!!

We have a date!!

January 27 at 11:30a we'll be going into surgery to bring little Ripplet into the world! We have our last appointment on Tues! Stay tuned!

And the waiting continues!

High risk dr appointment today. Just a biophysical (checking blood flow through heart, practice breathing, cord blood flow, checking organs, and intestine dilation) and nonstress test (NST- checking heart rate, movement, and my contractions).

The biophysical went great. The intestines haven't dilated any further for the past 2 weeks (20mm)- yay! But Dr Dobak said there was quite a bit of intestine out, couldn't say exactly which part of his intestines were out though. All of his organs, breathing, and blood flow looked great. He was moving A LOT today. Getting excited I guess!

Somehow I miscalculated what week I was in (for those that know me well- math is not my forte). So we're in the 35th week right now. Dr Dobak defintely wants to wait until baby is at least in his 36 week before we get him out if he can help it. We asked to go to 37.5 weeks if baby will stay in that long so he's into "full term" territory. Dr Dobak is checking with the other doctors about firming up a date, shooting for 31 Jan now.

My favorite part of the ultrasound today was the tech showing us hair on his head and a fat roll on his neck! Chubby bubby! :)

The NST went great as well- when he stayed still enough!!

So the waiting continues... Up next is my regular OB appt on Friday for another NST and progress check!

Busy day of doctor appointments!

We had three doctor appointments today- and my head is spinning!

First up was our high risk dr (Dr Dobak)for a biophysical profile and a non stress test (NST). The biophysical just checks his heart rate, his cord blood flow, and intestinal dilation. Then the NST checks his movement in relation to heart rate and any contractions I'm having. Everything was good today! Heart rate, movement, and flow were great and the intestines haven't swelled any more. The dr told us the baby is scoring very well. They grade the baby on various measurements they take at each visit and rate him out of 1000 points. So far baby is at 995 which is excellent news!! It doesn't really indicate how well his intestines are going to do after he's born, it just tracks how well he's maturing and thriving. Still lots up in the air until he gets out and we can see what's going on with his intestines. I lucked out in not having to get steroid shots for his lung development today too! We made it out of the "danger zone" so if I was to give birth now his lungs will be well enough along that he'll be ok.

Then we went to see the Florida OB, Dr Duke. We discussed C-section birth plan questions with her and she checked me for any progress. I'm 1 cm dilated and 50% effaced!! She said we should bring our bags to each appointment from now on in case they ask us to stay. We're getting close!!

Lastly, we finally got to meet the pediatric surgeon, Dr Lewis, today. She gave us some very real information about what she's seen at the NICU there. Some of it was what we expected, but she also told us some of the things that can go wrong (in very small percentages). She explained the process of feeding the intestines back into the abdomen and how the surgery will go, as well as things to look for in case there's complications and how the feedings will go. She told us it takes about a week or so to get the intestines back in and then 2-3 weeks before we know if the intestines work properly. All during this time, he's getting TPN which is nutrition through a PIC line into his system (not into his stomach). So the whole time his tummy won't know he's being fed but he's getting nutrients.:(

After we get some good bowel movements with no problems, they will start feeding him a few cc's of what I've been pumping. If he keeps digesting well enough, then they ramp up to where he can do full feeds. Once we get to full feeds with no problems we can go home! It'll be so important he gets what I pump because babies with gastro that get only formula have a 50% higher chance of parts of their intestines dying permanently which can be a huge problem. So I'll be pump pump pumping away!!

The thing that's so confusing for us is that one dr suggests we try to go for 39 weeks, another says she's never had a gastro baby go to 39 weeks so be ready for an earlier delivery, and the third suggested we set a definate surgery date not too far off to be sure all of the doctors we want there are ready (instead of rushing in at 2am for example). A lot to think about! Whew!

A change in plans

January 5, 2010
I won't post my NST appointments with Dr Wells in seperate posts because there's not a lot to report really. His appointment last week went great- he was very active for most of the test and then he fell asleep! It was ok though because we got enough information about how he's doing that "passed" the test!

I asked Dr Wells too about how Ripplet must be feeling. Does he feel the pain of his intestines swelling? In the last ultrasound the tech said he was holding his intestines- which was really cute, but also made me sad. I don't want him hurting in there and I can't do anything about it. She said keep in mind he's had this his whole life so he doesn't know anything different. Yes, after 30 weeks babies can feel pain because the nocireceptors are formed, but there's probably not that understanding of what pain is yet. Also, abdominal pain is different than pain would be if there was a cut on his arm for example. His stats show us he's not in distress so he's ok. I asked if taking small doeses of Tylenol would help him any (I just feel helpless not being able to do anything!) and she said no, he's doing fine enough.

Over last weekend I started having REAL contractions- I forgot how bad they hurt!! Definitely not the Braxton Hicks I had been having! And when they pass, you're so exhausted! It really wiped me out that day. Luckily they got further and further apart until they were finally gone, but it was a huge wake-up call for us- we have so much to see get done!! So we went out and got clothes for me for the hospital stay and NICU visits (and comfy enough to pump in until Ripplet can finally nurse), got the old baby clothes and blankets down, washed and put away, as well as some general cleaning in case we had to go in. I feel much more prepared now!

So during our Dr Dobak visit yesterday we were told of a change in plans... This whole time we had been counting down to 36 weeks as the week of delivery (so he was developed enough to sustain outside of my belly but his lungs weren't so big that they intestines would have a hard time getting back in). The new school of thought for 2011 (as Dr Dobak put it) is to go longer as long as the baby is still thriving and not in distress. He said after they all attended the pediatric conferences and then met as a team, this is their new approach based on the most recent research available. They try to follow what the well-respected children's hospital in Houston does so I feel like we're getting close to the same quality care. So we're going to shoot for 39 weeks instead.

I guess it's good because the more he can develop, the better his recovery will be, but was looking forward to getting him out so his intestines don't swell any more and getting him on the path to coming home.

Good news from the appointment was his estimated weight is now 4lbs6oz at 34 weeks and he's in the 33rd percentile (anything above 10 is normal). His echocardiogram looked great, he practiced breathing (once we woke him up!) and bladder function was working (if you know what I mean!). No pics from this appointment because he had his arms over his face the whole time. I think he just wanted to sleep in peace!

Frustrating news is that his intestines continue to swell. Now we're at 19mm and 20 mm for internal and external. The tech did make an interesting point, the intestines continue to fluctuate depending on what's going through them. His first measurement of the internal intestines was just 8mm so I got excited that it went down. But then later in the scan it swelled up to the 19mm listed above. So maybe they're not permenantly like that yet? Not sure what it all means. I could definitely pick out the external intestine- it looked like a huge sausage. :(

But since Ripplet is gaining weight, his stats don't show distress, and he's moving well, the dr believes he's ok to stay in for now since he's still thriving and his intestines are still working fine. I'm a little conflicted because I want him out so there's no permanant damage, but I know getting him out early means other organs or systems might experience complications or infections so it's best for him to stay in so we only have one organ to focus on (hopefully!) when he gets here.

He had another NST while at Dr Dobak's but this time he slept the WHOLE test. The nurse needed to see some movement and heartbeat fluctuations so she stuck a vibratiing instrument up to my tummy and boy did that get his attention!! He was mad! Heart rate went up and he got very busy moving all around, but we got the results we wanted and were free to go.

So it looks like the count down continues! Now we might deliver at the end of the month/ beginning of February. Unless he has other plans for us or his stats start going down. I'm going to be more closely monitored from here on out since we're going longer so I go to TWO NST appointments per week now, one in Pensacola and one in Fairhope- our insurance company is gonna love me!

Next up is a very busy appointment day next Tuesday. We get a NST done at Dr Dobak's, meet the OB Dr Duke to review the birth plan and get questions answered, meet the pediatric surgeon Dr Lewis to consult about Ripplet's surgery once his intestines have gotten back into his belly (takes about a week-12 days), and then a steroid shot for me to get his lungs to further mature in case he has to come out before term. Then I get a second shot in Fairhope in 24 hours and finally another NST with Dr Wells at the end of next week.

My in-laws will be in from Australia next Tues so we'll have back up on-site from here on out- whew!