Two Bottles!!

Camden's doctors and nurses thought that he was ready to increase feedings today. He receives 17 ml/hr continuously. He also is able to take two bottles a day now, instead of one. After each bottle, he burps, and falls alseep. On Saturday, both Camden and Maddie wore their Patriots uniforms (Maddie's was a cheerleader) to support our now unbeaten team! We are fighting with a red bottom, so we are now giving him Aveeno soaks twice a day, besides barrier cream and a powder to help. Sunday night's labs were also great!! His direct bilirubin is down to 1.7!! Way to go Camden!
Maddie and I had a lazy day at the apartment. We didn't even go into the hospital until after her nap, and she slept until 2:30!! Tonight we took Maddie to Boston Common on the train for the early fireworks for the new year. She enjoyed it, except she covered her ears.
So, happy new year to everyone!!

Slow and Steady....

Camden's progress has been just that. We are slowly increasing his continuous feeds, in fact he has tolerated 14ml/hr for a few days now. He even is doing very well with the 14ml by bottle once a day too. We may increase both of them tomorrow! he is also doing well cycling off his TPN for two hours each evening. His blood sugars were high enough that we don't have to check them any more. We also made the 4 kg club, 4.09kg today. He is definitely smiling now, and he has the cutest dimples!! We are amazed at how far he has come, but still a little scared of what lies ahead, and how we will manage. I guess we will though, thanks to our great family and friends for support and love and prayers!! Thanks!! We are just waiting for the team meeting next Wednesday to discuss discharge plans. Keep you posted.

Too Much of a Good Thing

Camden had been pooping so well, in each diaper, but it is very watery. So, today the nurse practitioners on his floor decided to stop the tube feedings for a couple of hours to adjust his input and output. This was after I gave him his 14ml of milk by bottle (in about 10 seconds, and while half asleep!!). We had also increased the feedings to 16ml/hr, and had to reduce them back down to 14ml/hr, so his body could hopefully adjust too. (5ml = 1 teaspoon)

The good news is that he tolerated cycling off his TPN for an hour the past two days, and he was off for two hours today! The way they check to see if he is tolerated it, is to check his blood sugar half an hour after cycling off and half way through the time off. He passed today, so we will do it again each day. Hopefully this will increase to a time when we can maybe go all day without TPN and only need it at night! The step after that is to try getting him off completely!! It is a step in the right direction.

All the nurses and even Dr. Puder are amazed at how light his color his now. Last week his direct bilirubin went from 7 to 3.1 last Sunday!! What a huge difference in his alertness level too. He even smiles now, and I think he may even be close to laughing!! :) He sits up with only a little help and loves to look around. We are all convinced that he is developmentally on track so far!

The staff is also setting up a TEAM meeting with everyone involved in Camden's care to discuss what needs to happen in order for us to be discharged from the hospital, and for us to go home to MAINE!! This meeting will hopefully take place in the next two weeks!!

Merry Christmas!!

It has been a whirlwind of a week. Sorry I have not posted anything new, time is whizzing by so fast!

On Wednesday, I drove Maddie up to Portland to meet up with my mom who took her to her house for a few days (would it be horrible to say that we both needed a break from each other??). However we were late, the Boston Pops were giving a concert at the hospital. Camden even came down to the entertainment area to join Andy, Maddie and myself for a great concert! Camden even startled occasionally at the loud music!
Andy and I spent Thursday and Friday at the hospital with Camden, for about 16 hours a day! Thursday, Camden's central line stopped working and was actually leaking from the insertion site. The nurses had to start an IV to give him sugared saline, an Camden is becoming a very difficult person to stick. He has needed to be stuck numerous times for each lab draw, and the only place they could start an IV was in his scalp):. But it worked. He was put on the OR schedule for a new central line on Friday. We asked the surgeon of he could also do the circumcision at the same time (while Cam was asleep!) and the doc said he could do that too.

So, Friday we spent the morning in his room and the afternoon in the OR waiting room, where we saw another short gut family waiting for their little one to get out from the OR also. So we chatted until Camden was moved into the recovery room. The central line works great, they can actually draw his labs from it like it is supposed to. The circumcision also went well and we were happy the surgeon was able to add it on to the time in the OR.

After a short visit to Cam's room Saturday morning, Andy and I headed up to Old Town to my cousin's house. We were having a family dinner for the holidays and we were also getting Maddie from my Mom. We had a great time visiting everyone, and it was nice to spend one night in our own beds!

Sunday, we visited the staff at St Joseph Hospital where I work, then to our good friends Chuck, Becky and their daughter Robin's house. We visited Hallie, our black lab, there too! We then went over to my Dad's house to see him and his wife. His wife Lou was out of town visiting family for the day, but we watched the Patriot's game with my dad and ate pizza. We had a great visit. Maddie even received her Christmas presents from my dad... a rocking horse that whinnies and clops!! She loved it!

We then drove to my mom's house for the night. My nephews were there for the weekend and maddie wanted to play with them before she would go to sleep. We awoke Monday morning to sunshine and temps in the 30's. A good time for Andy to take Maddie and the boys outside. They dug forts in the snow and slid down a small knoll out back. Maddie then came insde and exclaimed "I need new clothes!!". My brother and his wife then came over and we opened our stockings and all the presents under the tree. Maddie loved opening each gift! After a late lunch, Andy, Maddie and I headed for Boston. We stopped at the hospital to see Camden, who spent the weekend sleeping and looking cute for the staff. Camden also had visitors on Sunday. His aunties from NJ arrived and spent time playing with him and showing them how much he had changed since their last visit.
We spent Christmas morning at the hospital with Camden. Maddie and Camden were surprised by a visit from Santa Clause!! He had a present for each of them, and we had our picture taken with him. Aunties then stooped in and Maddie opened even more gifts!! In the afternoon, Andy, Maddie and myself went over to Mark and Marjorie's. Some of her family was there, and Maddie caught up with Josh and Erica, whom she had not ween since Thanksgiving!
We opened still more presents, one of which was a princess outfit complete with jewelry and gloves, for Maddie from her aunties!! We sang songs, ate a wonderful dinner, and Maddie was of course, the center of attention! She finally fell asleep at 10pm that night after two days of Christmas!!

Camden is making slow progress toward discharge. Camden 's tube feedings have been increased to 14ml/hr, and he is getting one bottle a day of 14ml! He still loves that one feeding. His weight is almost to the 4kg club! His color is also improving...almost as pale as his mama!!

Snowed In!!

It has been a crazy weekend! Andy, Maddie and I headed north on Thursday around noon, thinking we would beat the snow. Instead we became part of the biggest parking lot on history! It took us over 6 hours to go 13 miles to Route 1 in Saugus, Mass. We did not pull into our driveway in Veazie until 1 am!! Madness!! We returned to Boston Monday evening, after digging out from yet another snowstorm on Sunday. Thank goodness Maddie and I love the snow! Maddie even spent Saturday night with my aunt Alice and uncle Steve! They played in the snow and baked Christmas cookies! I even got some shopping and wrapping done during the storm.
Over the weekend,m Camden chilled out with all the nurses on 10 east. His tube feeds went from 4 to 6 to 8 ml/hr and his TPN went down from 16 to 15 to 14 ml/hr. His weight today was 3.9 kg (I always have trouble converting it to pounds and ounces!). He looks a little less yellow today, that may be due to his direct bilirubin on Sunday fell to 5 from 8 or 10!! Great progress. We don't mind the slow progress....it wins the race!! PT was working with him today too, no problems there, either. Good flexibility, and on target developmentally.
Just wanted to close today's report with a quick note to Sue.... get well and on your feet soon!! We love you Nana!!

Celebrities Visit Children's Hospital

Over the past two days, there has been a lot of excitement at Children's Hospital. Yesterday some of the Red Sox pitching crew came to visit. Daddy took Camden and Maddie down to the entertainment area to see them. They even got up close with the World Series trophy! Today, some of the Celtics came in for a visit. Daddy took Camden over to another play room for a look, but there was too many photographers in the room to get too close, or for a photo op. Maybe next time!
Camden has been doing well now that we have started to give him breast milk through his J tube. He vomited a few times late last week, so it was stopped for a few days, but we started it on Sunday and he it tolerating it well so far. His direct bilirubin was up to 12 last week has even started to drop to 8 this week. His weight yesterday was 3.79 kg.
Maddie and I had a quiet day at the apartment today. We walked across the street to the library after her nap and checked out some new books. Daddy spent the afternoon with Camden. I really did not get Christmas shopping started like I thought I would yesterday, maybe later this week?!?!
Andy and I head back to Maine on Thursday. Andy will work over the weekend and I am hoping to have my OB appointment on Friday. Then Maddie and I will drive back to Boston on Friday afternoon or Saturday morning, depending on the weather. We are hoping that my mom and her husband Bob will join us for the weekend. Maddie misses them a lot, it has been over three weeks since her last visit.

Happy Birthday Nancy

This weekend, Nancy and Flo came to Boston for a visit. Andy, Maddie and myself met them and Mark and Marjorie for dinner at the Dogwood Cafe here in JP Friday night. Maddie even made a new friend there, a 15 month old girl named Ellie. They walked around the restaurant and listened to a young man singing. They even danced and held hands as they walked around!
Saturday, Nancy, Flo, Maddie, Andy and I spent most of the day at the hospital visiting with Camden. He enjoyed being held by his aunties, and they loved holding him and seeing how much he has changed in the month since their last visit. Then we went to Cambridge for dinner at a good friends of Mark and Marjorie"s. Their oldest girl is also a short gut child. We also participated in their celebration of Chanukah, with lighting of the menorah, and singing lots of songs. Maddie had a great time playing with Reena and Arella, and they even taught her how to play a dradle game. She had a blast! Andy and I even got to chat with Reena's parents about her progress. Reena even showed me her G tube button.
Sunday was aunt Nancy's birthday!! We went over to the Mark and Marjorie's for brunch. Our good friend Judy came in from Marlborough to join us. We then went in to see Camden before the aunties headed back to NJ and Judy headed home. Maddie and I came back to the apartment for a quick snack, then Maddie took a 3 hour nap!! I even joined her for some napping too. Andy spent the afternoon napping with Camden on his chest. Camden even wormed his way up under his chin! It was nice to have some down time. Tomorrow I am planning a shopping morning with Maddie to start Christmas shopping, and see more of the city.

A day at Children's

We have spent much of the last few days at the hospital with Camden. Maddie and Andy came in later on the morning, I went in around 10 am. We eat lunch, then one of us take Maddie to the sleep rooms for a nap by 2pm. Then we all visit Camden for a few hours and head back to the apartment by 6 for dinner. It has been working out well except we have started to realize that Andy is the one that is to get Maddie to sleep. I can't seem to do it without tantrums. So to keep the peace, it's Andy's job. My job seems to be walking in the hallway with Camden... he loves looking up at the ceiling.
Yesterday we had a nice, though quick, visit with the Brogans. They were on their way for Ellie's clinic visit, and stopped by Camden's room. It was nice to finally meet them in person, and we look forward to future meetings.
The Christmas tree lighting at Children's was also yesterday, so Andy, Maddie and I went down to the lobby for that. Maddie really enjoyed the choir! She danced and sang along. Today we finally got Camden off the floor for photos by the Christmas tree, and I hope to get them made up for cards this coming week. They were great!

Life after Poop

Camden is having another one of those miraculous days of progress. Besides continuing to poop with almost every diaper (that's my boy!!), he started to receive Pedialyte through his J-tube this morning. After short gut rounds, the surgeons stopped in to his room and checked on him and us. They planned to start him on formula this weekend, then we reminded them of the stash of breast milk in our freezer that we transported to Boston. They were delighted to learn that, and at 2:55 today, Camden began "eating"!! He receives 2 cc's of breast milk every hour and so far has been tolerating it well. If all goes well, they will increase the rate each day or so.

WBZ, a Boston news channel was also in the hospital today, filming families for their Day of Giving on Dec. 20th. All four of us were luck enough to be filmed in the play room for footage. We will have to watch to see if we make it through editing!

I realize that not every day from here on out will be big days like this week, but it is nice to feel progress towards going home one day soon!

We have POOP!!!

Andy checked in with the nurses today by phone and Tracy said Camden pooped three times this morning!! I guess the contrast from yesterday's study did the trick, along with major surgery one week ago! We have to discuss the next step with the doctors, but hopefully it means we can start the feedings through his J tube soon!
Andy, Maddie and I are here in Maine, snowed in after 18 inches of white gold! Maddie had a blast making snow angels, and chasing mommy in the snow. She did not even want to come in for hot chocolate! We will be heading back to Boston this afternoon, after visiting with my brother and his family, and stopping to see my Dad for supper.
Way to go Camden!!!

Company from Maine

Camden is settling back into life on the 10th floor very well. he is weaning off his doses of Morphine and Maddie and I were able to hold him more over the last few days. He is such a joy to watch, looking around his room and trying to figure out what Maddie is all about. He is still working on that one! He even puts a little weight on his legs! But overall, he loves to nestle by my neck and have snuggle time! That is the best!!
We had special company too... Aunt Alice and Uncle Steve! They drove down from Old Town to spend the weekend with us while Andy was at home working. They also were able to spend time holding Camden, playing with Maddie, and seeing south Boston. Maddie and I then rode back to Maine with them for a few days of rest at home, just in time for a whopper of a snowstorm Monday. It has been predicted we will get 12 to 18 inches of the white stuff! We can't wait! Maddie loves to play in the snow. We are heading back to Boston Wednesday after I have a checkup with my OB.
We are just waiting for his GI series on Monday to check the surgeon's fine work, and see if he is ready to start (ever so slowly!!) to be fed through his J tube. Hopefully we will the get the OK and he will actually get a few cc's of feed! Keep your fingers crossed.

Movin' on Up...to the Eastside

Camden had another move today. He moved back up to the 10th floor, east into a PRIVATE room!! Before his move, his NG tube, foley, and oxygen were removed. Now we don't have to rush to get pics when the NG tube comes out... we get pics of his beautiful face anytime we want! He watched all the moving from his crib with big blue eyes. He stayed awake most of the afternoon, and he seemed very comfortable. He actually went 6 hours between pain meds. All the staff on the 10-East were so happy to have him back. Many of the nurses came to welcome him back, and check on him. We know we are leaving him in good hands when we need a break from the hospital.

One big step forward

Today Maddie and I went into the hospital to visit Camden, she was excited to ride the bus! She played in the room, family room and playroom very well and then daddy came into the hospital at lunch time. Maddie fell asleep for an hour and half, then we played in the 10th floor playroom.
Camden had a big day. At 4pm, it was decided that his breathing was effective enough on his own, and his breathing tube came out. It was bothering him anyway, his heart rate and oxygen levels would drop occasionally. It is called a vagal response. He tolerated the extubation very well and seemed to smile afterward! When we left the hospital, he was resting comfortably. The morphine and versed that he was getting every 90 minutes or so was changed to a continuous drip, then both were stopped once the breathing tube came out. His eyes were open some today and after the extubation, he was making great eye contact. We call the ICU each night for an update, and will update all if any changes. Hopefully he will return to the 10th floor by tomorrow, they all miss him up there.

Surgery is over

Monday was a very long day at Children's Hospital for Andy, my mom and I. Camden had his big surgery and we waited in the lounge. He went to pre-op at 11 am and went under the knife at about 12:30. We got updates every 90 minutes or so, and even received 2 updates from Dr. Duggan who was in the OR with other cases. At about 7pm we got word that they were finishing up. He was moved to ICU at about 8pm.

We learned that he grew small bowel from 26cm to 61cm on his own. After the STEP procedure, he measured 96cm!! Still about 1/4 of the small bowel that he should have, but it was more than I thought he would have, and enough to work with. The G/J tube was placed, so we can suction from his gastric tube and feed through the J tube port at the same time if needed. The cholangiagram showed a normal gallbladder, and the liver biopsy went well.

The anesthesiologist tried to take out the breathing tube, but he just was not ready enough. Even today, when they tried, he appeared to be in too much pain and it was decided to leave him intubated until tomorrow at the earliest. But as we were getting ready to leave, he was opening his eyes and looking around. He was getting Morphine and Versed every 90 min or so but he went more than 2 hours this afternoon! Things are looking good.

He even had a visit from one of the nurses from the 10th floor too. Tracy came to check on him. They all miss him and want him back on their floor soon!

So we will see his progress tomorrow and keep everyone posted. Thanks for all the thoughts and prayers!

Saturday at the Museum

Today, Andy, Maddie and I took Julia to the children's museum in Boston. We all had a blast! Maddie and Julia each found so many things to explore and try out... like making bubbles, playing different musical instruments, trying out a bobcat bulldozer, and shopping in a Mexican market. We all met my cousin Ryan, his wife Lisa, and their sons Tyler and Caleb there. They were visiting Lisa's family in Boston, from Virginia. And where was Auntie Jana? Holding Camden for a good four hours!!! He had a great day! His weight is 3.7 kg this morning. We are all waiting for surgery on Monday. I'll keep you posted.

Blog Updates Finally.....

YES... Andy and Tonya now have a reliable computer and internet connection both at the Hospital and their Temporary "Boston Home" and have figured out how to add pictures and web albums... so be sure to check Both forward and backward as Andy is trying to get past history posted and Tonya is posting forward....

Good Luck to them...

-JCBW

p.s. What a cutie... I finally go to hold him earlier tonight...

Thanksgiving Blessings

Maddie, Andy, and I are in NJ today for Thanksgiving. We are so blessed with our family and friends. Our support system has made this time in Boston so much easier. Thank you all.
Nana and Grampy could not stay away, and came to Boston from NJ Sunday, and visited until Tuesday. Grammie also stayed until Monday afternoon to visit. Andy actually returned to Boston Sunday night which trilled Maddie.
Camden has had a very busy week. Monday he had a HIDA scan, in which he was injected with radiated isotopes and scanned. After lunch, Mommy picked him up from Nana and broke his Broviac central line. Mommy quickly pinched off the line and called for the nurse. They were able to repair the line. Camden then went back to nuclear medicine for another scan of the isotopes, but no more injections. Nana and Grampy headed back to NJ with Maddie, and Grammie headed back to Maine. Andy and I spent the rest of the afternoon holding Camden.

Tuesday Andy and I spent the day at the hospital with Camden. He was holding his head up more often and even looking around. He watches his mobile and the Child Life Specialist LaKeisha, (she is amazing tool that adds to his team) brought him a mirror for his crib too. Camden even had an eye exam by the opthamologist. He passed the exam. He also had one more scan in nuclear medicine.

Wednesday morning Camden had a rectal biopsy to check motility of the colon. It took about half an hour and he tolerated the procedure well. The audiologist came for his hearing exam too. We found that Camden's hearing is muffled. He will have another test in 2 to 3 months, or before he is discharged from the hospital. If that shows no improvement, Camden will need hearing aids.

So we met with surgeons to discuss the surgery on Monday. they have saved all afternoon for the surgery, in which they will most likey do the STEP procedure, place a G tube, dilate any stricures in his colon, and a liver biopsy. The surgeon is very confident about this course for Camden. Our ultimate goal is to get off TPN and reduce the need for Tube feedings as much as possible.

So we headed to NJ Wednesday afternoon and are having a great time with family. We will return to Boston on Friday. Camden had his Thanksgiving outfit on and super assistant Sara even took photos for us. Once we download all the pics to our laptop I can figure out how to put them on the blog.

Happy Thanksgiving to all, and thanks for the prayers and thoughts.

Quick Update from Mom

Camden's weight today is 3.56 Kg (7lbs, 13oz). His color is a pale yellow, better than the last few days. Big sister Maddie , Grammie, and Mommy had lunch with our good friends Mark and Marjorie and then walked in the Arnold Arboretum here in Jamaica Plain. Maddie napped while we were walking, but she woke up to get in the car to go see Camden. He slept most of the time we were there, but we did go for a couple of walks in the hall with Maddie and Grammie. I think he was dreaming of more ways to pull out his NG tube! We are waiting for his HIDA scan of his liver on Monday. He is also on 5 days of Phenobarbital before the scan to help the liver excrete bile better.
We miss daddy who is at home working for the weekend. Luckily, he will be here on Monday night. Get some sleep Daddy!!

Welcome to Camden's Blog

Camden turned 1 month old on October 18th. He is stable and growing, and the doctors are waiting for him to grow some more before determining what surgery he will need next (if any.) He was born on September 18th, 7 weeks early, when it was decided that the dilation in his bowel was causing a back-up and needed to be addressed.

This photo of Camden and his big sister Madison (age 2 - isn't she adorable?!) and it really illustrates her concern and tenderness toward her little brother.

Now that this is here, Camden's parents and others will add more information about Camden, his medical history and status, and life with SBS.

-Auntie Jana

It's A Boy

Well at 09:54 a baby was born... It's a Boy they said and he weighed in at 4lbs 11oz breathing on his own and pink. All Good Things so far.


for a link to day 1 pics... Click Here