Bye bye, Broviac

Phoebe's broviac (central catheter or "IV") was removed today. All went famously. The procedure required general anesthesia, and was completed within 45 minutes. What a cinch. We arrived at the hospital at 9:30 a.m. for our 11:00 "OR" time. They took us into the surgical acute care unit (SACU) for paperwork etc. at 10:00 and they took her for the procedure at 10:45. We wiped our misty eyes and went back to the waiting room. At 11:30, the surgeon visited us in the waiting room, telling us that everything went exactly as expected and that we could go see her as soon as she woke up. They called for us just a few minutes later. As we walked through the SACU, we could hear her crying, and as we came into view, she started reaching for us. It hit me that she is becoming such a big girl- looking more like a toddler than a baby, and able to communicate her basic desire to be with her parents.

No more:
-worrying about "line sepsis" (general infection of the Broviac line that goes right to her heart) when she finds the line in her shirt and would suck on it
-changing the dressing, which required tying up her arms so she couldn't pull at the exposed line or introduce germs to the sterile field
-changing the end cap
-flushing with saline and heparin daily
-sealing up the broviac entrance site with gauze and tegaderm (a large, clear plastic adhesive bandage) before a bath
-removing the tegaderm etc. after a bath (ouch!) and the protesting that accompanied it
-fielding questions

Now we can:
-rest assured that a fever is a fever and not line sepsis
-get rid of the boxes of medical supplies crowding her room
-have a tubby whenever we want because we don't have to worry about the Broviac site getting wet
-Celebrate!

We had a mini pizza party at home this afternoon to celebrate. Phoebe had Cheerios. This is the best Christmas gift we could want. Congratulations, Phoebe! On to enjoying life!!

November pics

Chile Today, Hot Tamale

Do we have a meteorologist in the making? No, just a wicked halloween cutie! Phoebe joined her friends Erin and Thomas for some trick-or-treating fun.

Two-for Toofer!

Here's proof that we were in the hospital:Phoebe resumed normal activities so soon after coming home that you may not have ever thought she had had major abdominal surgery. Activities like: playing with the cat, playing with the dog (and Uncle Raj),
playing with Daddy... YAY!!
And working on... ...two new teeth!!

New Poop

Phoebe is doing great. She saw the pediatrician last Thursday, and the Surgery, GI and Nutrition teams on Monday. She is doing as well as can be expected, which is pretty great. She weighs 18 and a half pounds. She has no nutritional limitations now. She can eat anything a regular seven month-old would eat, and as much as she wants. The docs have added a medication, called cholestyramine, which will make her poop less acidic (by chemically binding the bile salts in her intestine). Her diaper rash is totally manageable, but not without using globs of diaper cream and powder with each diaper change. The baby powder is messy, and although it is not recommended for use on babies, it is great for keeping the diaper cream on her bum and off the diaper. She continues to be weaned off the TPN. She now gets TPN for 8 hours a day. The surgeon said that as far as he was concerned, he's pretty much done. Once her Broviac line gets taken out, we can sefely say that we're D-O-N-E with surgeries. I must say, though, that since we had to work with all these pediatric specialists, we're glad we fell into the hands of our wonderful surgeon, GI, and Nutritionist. We gladly sing their praises.

Phoebe is seven months old today!

Thursday

Phoebe is back to being a happy kid. She's over her cold, which is GREAT. AND I think she might have gotten her days and nights straightened out. She had been having a hard time sleeping through the night since the surgery, mostly because pooping was waking her up, but also lately because her congestion was making it difficult to breathe. She hadn't slept much, due to the cold, in a couple of days, and last night (drumroll...) she slept from 10 pm to 3 am. Yay! Unfortunately, Mommy now has the cold.

Home Again

Phoebe is home and doing great! We are so pleased with her progress. Her recovery from the surgery at the hospital was "textbook". Every day brought more positive changes, and it has been that way ever since. She continues to smile, laugh and play despite what we have dubbed her "poop attacks". She is still a little uncomfortable when she poops, but it seems to get a little better each day.

Getting better

Phoebe is doing well. Wednesday was a good day, with a couple little blips. She still has all of the tubes we talked about before. For most of the day, she was very sleepy. She would wake up every few minutes and cry a little, then fall back asleep. So we thought she was in pain. We called the anesthesiologist, and he came up to see Phoebe. He said he thought she was not in great pain because he already knew the epidural was working (it was used during the surgery) and because she was consolable. But, he wrote orders for morphine and another pain reliever that is similar to ibuprophen, in case she became inconsolable later in the day. She started to wake up for longer periods around 2 in the afternoon. The nurse said it was because the anesthesia was wearing off, which happens about 24 hours after it is given. But, we thought she was waking up and crying because of pain, because she started to cry inconsolably. So the nurse gave her morphine, and she instantly stopped crying. Phew! We were glad we trusted our gut; she just doesn't cry unless there's something wrong! Phoebe has a catheter for urine, and later in the day, we noticed the flow of urine stopped. So the nurse called the docs and they upped her IV fluids. But still no urine. So eventually, the surgical resident examined her and tried flushing the tube. There was a blockage in the tube; after it was cleared, she was peeing constantly! By the later evening, Phoebe was awake for a 10 minute block of time- the longest all day. It reminded me of when she was a newborn- as soon as she opened her eyes, we would try to be right there so she saw us & knew we were there, and then she would fall right back to sleep. But we got to play with her a little, and at the end of the day, we got her to laugh. Yes! That was just the best. Mommy turned 27 today, and that was the best present EVER. Phoebe's incision looks great, and we're looking forward to seeing some of the tubes start to disappear.

Sunrise in the hospital

Phoebe came out of surgery yesterday just fine. Everything went just as expected. At about 8:30, the transporter camte to Phoebe's room and he lead us to the surgery holding area. In that room, we were asked a million questions (again), her ID was checked, and we met with the surgeon and the anesthesiologist. The docs came in at about 9:00. They told us again everything that was in the plan for the day and gave us opportunities to ask any last-minute questions. Mommy could barely speak; there was a giant lump in her throat and there were tears were streaming down her face. The anesthesiologist came back into the room at about 9:45, and gave Phoebe a sedative that made her really loopy. We hadn't been able to feed her anything since 4 a.m., and it had now been five hours without anything in her stomach, after a day of just clear liquids. Needless to say, she was very tense wondering why she couldn't have any food. She instantly relaxed and this dopey expression came across her face. That's when Mommy really lost it. At about 10:00, Daddy handed Phoebe to the anesthesiologist and he took Phoebe in his arms and carried her to to the OR. Mommy and Daddy stayed in this room for about 15 minutes, and cried, reminded in such a way of the heartache we've already been through, and hoping that our little baby girl would come out ok on the other end of today's surgery. Once in the OR, it took about an hour to get her ready with the anesthesia; the surgery itself started at about 11 a.m., and was finished at about 3:30. The great news is that because the surgery was about 4 1/2 hours (under 6), Phoebe did not have to go to the PICU. She spent a couple of hours in the recovery room and was then taken right back to her regular hospital room.

Phoebe looks great, for having undergone major abdominal surgery. The docs are giving her extra IV fluids, so she looks a little puffy, and she is pretty zonked from the pain medications so she's sleeping a lot. She has several tubes going to and from various places in her body. There is an N-G tube draining any fluids her stomach produces, so they don't build up in her stomach and make her bloated and uncomfortable, and so they don't travel throughout her digestive system and irritate the sutures when her intestines wake up (the body stops them from working for a few days after they've been manipulated in surgery). There's her Broviac IV, which is duck soup, old hat. She's getting just some fluids at the moment. The docs are hoping to start TPN again maybe tomorrow or Friday. Then Phoebe has an epidural for pain management (like what Mommy had during delivery). The epidural is on a constant drip, and provides her with a local anesthetic and fentenyl, an opioid that makes her loopy. Coming out of Phoebe's incision is a tube draining fluid from inside the abdominal cavity. This is there because there is a ton of fluid in the abdomen after such a surgery; after the surgeons finish sewing up, they wash things off help stave off infection, and the "gut" naturally "weeps". This fluid needs to be removed because, as we all know, germs like dark, warm, wet places. The last tube is a catheter for urine. They gave her this for two reasons: to avoid manipulating her body for diaper changes (cuz of the major ow-ie on her belly), and to be able to measure her output so they can balance her fluids via IV. Her incision looks great, too. Overnight, Phoebe pulled out her N-G tube. The nurse called us (to tell us they put in another one) in our hotel room but we were sleeping so deeply that we didn't even hear the phone. They made loose little splints for her arms from gauze and tongue depressors to keep her from pulling it out in a frenzy again.

Phoebe did great. She is a champ. For now, she is resting quietly and healing up. Thanks for checking in!

Phoebe goes to the hospital on Monday morning. Mom and Dad are coping well. We have our anxious moments (well, mostly Mommy) but we have been successful at talking through the scary thoughts. We look forward to being on the other side of this, and back at home. For now, starting on Monday morning, we will feed Phoebe just clear liquids (juice and pedialyte) up until her procedure on Tuesday morning. The surgery is scheduled for 9 a.m., and is estimated to last about four hours. The surgeon plans to perform a Duhamel pull-through (for all you google-savvy folks). After the surgery, Mom and Dad will be able to be with Phoebe when she wakes up in the recovery room. If the surgery lasts under 6 hours (which is more likely), she will go right to the regular pediatric floor. If the surgery goes longer than expected (over 6 hours), she will have to spend a day in the Pediatric Intensive Care Unit (PICU), to recover from anesthesia effects. Needless to say, we're hoping everything goes as planned. There is a computer available to parents in the Pediatric floor at the hospital; we will update as we can but there may not be pictures until we're all back home. Until then, we leave you with these images of happy Miss Phoebe.

Sitsy Mac Sits-up-herself

Saturday morning, we could hear that Phoebe was awake. She wasn't crying, but she was making her playing sounds. We could also hear that she was playing with her aquarium (the white and aqua thing by her feet). We expected to see her spinning the little toy on it with her hands...but she was facing the opposite direction than she had been placed, and she was watching her foot as she spun the toy while chewing on her binky. Wiggle monster!
One of these mornin's, you're gonna wake up smilin'...Guess who's sitting?!
Teething brings out the maniac in the best of us.

Cutie Patootie

I believe congratulations are in order....

Congratulations, Phoebe!! You are officially OFF IV FLUIDS!!! You've come a long way, kid.


This is not to say that we won't need them again, especially around the time of the surgery in a couple of weeks, but we're relishing the moment.


Wow. Wow-ee-dow.

Baby Party

Rosie had her first birthday party this weekend. We had such a fun time! Look at this adorable pile of babies, daddies, and....(most importantly)... TOYS!!!

Twin binkies. The only way to travel.

Back Together Again

The big news is that Phoebe's "reconnection" surgery has been scheduled. This is when the surgeon will suture the part of her intestine that works to the rectum. The technical term for this procedure is a "pull through". The surgery is scheduled for September 11. This is much sooner than we expected. As we've been writing in the blog, we expected that the Broviac would be removed at the end of the summer, and then that we would wait a few months before doing the pull-through. But, alas, the surgeon believes that Phoebe is ready for the reconnection now (he wants to leave the Broviac in for a little longer because she may need TPN again for a few days after the surgery). Phoebe has met all the objective criteria for the reconnection...and sooner than anyone could have predicted. Go Pheebs! Anyway, the three of us will check into the hospital in the morning on the 10th. Overnight, Phoebe will experience "bowel prep", much like what adults have to do before a colonoscopy. Phoebe's bowels will be cleared of poop and (we're not totally sure about this yet, but) we think she'll be given clear liquids in a bottle. Needless to say, anxiety is high again. We can't believe we're going to bring them our beautiful child so she can be operated on again. Now we just want to be on the other side of Sept 11. We're feeling better than we did during her stay in the NICU because we realize that in no time at all, her major surgeries will be OVER. After the surgery, she will need to stay in the hospital for 5 to 7 days. The major concern after the surgery is that Phoebe will experience what the surgeon described as a "raging diaper rash". If you think about it, her adorable, perfect, poor little bum has never been exposed to poop! There are a few barrier creams (much stronger than desitin or balmex) we can get to help with the rash, but we have this overwhelming feeling that we have no idea what we're in for. Regarding the rash. We pretty much know that Phoebe is going to be a real firecracker. And now for the fun part, the pictures. Phoebe started solid food...here she is enjoying some rice cereal. Yum.
Are you sure there's no more, Mom?
We took Phoebe for a ride on a friend's boat. It was a beautiful day, and we all had a great time enjoying the views, some relaxed conversation, some coronas, and a dip in the salt water. The definition of summer.
A cute one of Phoebe and her MommaGay.

Not-so-TPN

A little medical update on the Pheebs. Phoebe's TPN is, well, no longer TPN. She is getting just fluids in her IV, which also means that she gets all her calories by mouth. The docs are keeping her on IV fluids through the end of the summer, so as to virtually eliminate the risk of becoming dehydrated. She is getting more and more milk every week, and this week we will be adding powdered formula to her milk. This will increase the caloric value of her feeds. She's doing great. More pictures coming soon.

Phoebe just wanted to say, "AHHHHHHH!" to you all. That's Phoebe for, "Hi!" Really, she's been VERY vocal. Phoebe loves to experiment with her voice, and is not shy about doing it loudly. It is hysterical. Phoebe has started to laugh, especially at MamaGay's pretend sneezing, and is rolling over from back to front.

In medical news, Phoebe's situation continues to improve. She had advanced on her feeds each week and has gone down on her TPN. It looks like she may have some major diet changes this week. The docs have been suggesting that we will be starting solid foods this week, and switching her TPN to just fluids. This is all in preparation for eliminating her Broviac line. We have been told that there is a strong possibility that the Broviac will be removed at the end of the summer.

Phoebe and Dad talk shop about the latest conducting techniques.




















































Cate, Phoebe, Cousin Loudon, Uncle Chris, Cousin Evan

I must apologize for allowing such a lapse between postings. We have had quite a couple of weeks, fighting off fungal infections of both the ostomy and broviac exit sites. The docs prescribed nystatin powder for the ostomy site, and a week later, nystatin cream for the broviac site. Although the rash must have been itchy, Phoebe acted her usual happy self, giving us little indication that she was uncomfortable.

Phoebe is getting more food again this week, and less TPN. She now gets about 66% of her nutrition from food, and 33% from TPN. Yay! The GI doc said that she's trying not to get too excited, but that she's excited. Knock on wood, cuz we're all feeling pretty darn great. See?














In other news, Phoebe is doing so well that the homecare nursing company has discontinued her "block" nursing. This means that Kathy, Phoebe's nurse who stayed for six hour shifts, will not be coming to see her any more. It's a good thing because it means Phoebe is getting better, but it was sad to see her go. Phoebe really liked her, and Mommy loved having the support from such a knowledgeable nurse. Thank you Kathy, we love you and we'll miss you!














Can you guess what happens next?

Phoebe's Great-Grandmother "Nonni" held a welcome party for her last weekend. It was such a nice party, and it was great to see Phoebe interact with her family members. Here's an adorable picture of Phoebe with her Nonni.

Phoebe loves to push with her legs. She's very strong!

Now do you believe me about the bubbles?

Mountainville Voyage

Phoebe met her cousin, Evan, for the first time this weekend. We were tickled pink to see them together.

Phoebe spent some quality time with Uncle Cary.

And went gaga for Auntie Zenta.
















Time for a nap with Mama Gay. Mountainville has that effect on people.





















Baby's asleep, time to play! The fam enjoying some poolside refreshment. Cheers!