jessandjimfamily - jessandjimfamily

So, we finally have passed a whole year without an infection!  WOW!  What a year!  Isabella has started dance class as well as going to soccer practice.  It is a major amount of cuteness.  Maybe some of you have noticed that Isabella and Jess are gracing the the gas stations across the country.  Yes, Irving picked Isabella to be the face of the Fuel the Care campaign.  It was a big surprise, but we at least we will net some cool posters after it is done.  hah  She has started making some forward progress with eating, but still baby steps.  We are hoping for some big strides over the next year because pre-K will be coming soon!
Jim

So, after a year of food therapy Isabella turns around and says that she wants some yogurt because "It makes her feel better" and starts putting some in her mouth! I could not even believe it...just out of nowhere!?! I just sat there with my mouth hanging open....so she fed me too. haha  She is really growing up.  She is back up over 30lbs which is great and getting so much taller.  She is heading to Portland today for an Upper GI Study but will be back by dinner time.

-JB

Wow, things have been going so well for us lately.  Isabella had the Nissan Fundiplication and it has completely stopped her spitups.  She has moved to bolus feeds during the day and has pretty much shed her backpack for most of the day.  That has really helped with her gross motor skills, as has starting gymnastics, which she loves to do.  This week she broke the 30lbs mark which is incredible and has been happy as a clam.  We went on a family camping adventure last weekend and the kids had a blast.  It rained for a day and a half but that did not stop them from having a blast and playing together all weekend.  Hopefully we will be moving her formula amounts up which should help with her weight gain and allow us to decrease the dependency on TPN.  This looks to be a great summer!
-Jim

Wow, what a weekend!  This weekend our friends through a fundraiser for Isabella's medical trust.  It took us by total surprise when we found out about it.  Friday night our favorite band, Eightysomething, played at the Bangor Brewer Bowling lanes while a silent auction was held.  Jimmy Murphy, Mike and Becca Labrie and Laura Garland were the main contributors in getting everything organized.  What an event, we raised nearly $3000!  So many great people came out to support us.  Thank you so much everyone!

Ok, so much has happened, where to begin.  Well, Isabella went into the hospital on Friday, May 13th for a planned admission.  She had a Nissan Fundiplication and while the doctors were in there they checked the bowel in case we needed to STEP again.  We did not, which is nice.  They cleaned up some adhesions and put her all back together.  She had an epidural until Tuesday and started her feeds again.  This time we are going to bolus her feeds instead of a continuous "drip" during the day so she will have more time off her pumps.  She came home on the 18th and seemed pretty happy to be home and out of the hospital.  What a tough little girl.  Thank you for all of your support.
-JB

Sorry for such a long break.  Things have been going pretty well lately with some extended reflux.  We visited the Ear Nose and Throat doc this week and her ear infections have cleared up but we will still have to watch them. She is at 18 hours of TPN and working her way up on feeds.  On a much brighter note, Isabella is taking to the potty pretty well.  She loves getting her sticker when she is done and is so proud of herself.  It is still a long road before she can get there every time but it is a start.  We took our first hike in the City Forest this weekend and the kids loved it, they both love being outside.  Hopefully, I will get some new pictures up soon.
-Jim

So Isabella, finally broke her streak and was admitted to MMC on Sunday.  It had been 5 months!  WOW!  Luckily, she is already headed back home today after only a short stay in Portland for a couple quick surgeries (A new central line and a liver biopsy) and good once over by the docs.  Looks like we are going to start over and see if we can break the 5 month record.
-JB

Ok, so as of today Isabella has been home 10 weeks.  Wow!  We have still been conservative in our excursions but have started to get out a little more.  Isabella loves shopping, mostly because she can walk around and say hi to everyone that walks by and go meet other kids.  She is insistent that she is a "big kid" now, but not in my eyes.  She went sledding for the first time and was not sure.  It is a little scary, but she loved throwing snowballs and being outside.  The amount of formula has not increased and most likely will not until the beginning of the year.  We have been going to OT for "food therapy" and have experimented with playing with different types of food.  Slow progress in that area but progress none the less.  That is what we expect, slow progress.  All in all we are happy with her progress and are happy that she gets to be home.  YAY!
-Jim

We have been home for about 7 weeks.  This is a new record by a lot!  We have moved to a more conservative approach to increasing her feedings and it seems to be working nicely.  She had a recent doctors appointment and they think that she will be on her central line for a long time which is disappointing but she is getting better and we will do whatever it takes.  Right now she is at 40ml/hr for her formula and we think that we will be at this rate for a while.  Also, Isabella has discovered that she loves to shop, I am pretty sure that she gets that from her Momma. ;)
-Jim

Wow, what a ride.  Isabella has been home and doing well.  We have had a few adventures while she has been out of the hospital.  Going to the cow barn to visit the animals, the ANG Halloween party and they really loved going trick or treating!  We are working on Isabella eating solid foods and she has had great strides drinking from her cup and James got his Junior Yellow belt on karate.  Life is good.
-Jim

Yes, we are getting spoiled and we love it.  Isabella has been home for a couple weeks and is doing great.  She moved up to 40cc/hr on Friday so we are headed in the right direction.  We took our annual trip to the pumpkin patch, corn maze and apple orchard this weekend.  The kids loved it and hopefully we can get a few pictures up soon.
-Jim

Last night Isabella made her escape from the hospital and is happily home.  She is still on a couple antibiotics which make for a lot of waking up in the middle of the night but it is well worth it just to have her home.  She is definitely learning to express her needs verbally and is counting, singing, learning her ABCs and colors.  She is growing up so fast!
-Jim

Ok, so last Saturday Isabella spiked a 104 degree temperature.  So, we head to Portland and sure enough she has another infection, actually 3 infections this time.  But in the week since, she has cleared all of the infections and has a new temporary central line so we can protect and preserve the old one.  Isabella seems to take these setbacks and turns them into opportunities, she has started eating solid foods!  She is loving pretzels and corn but has tried peas, carrots, mashed potato and ham.  She is still not eating much from a caloric standpoint but we can see the difference in her attitude.  We hear her say, "Bite, bite?!" whenever we have food and she is pretty happy sitting for dinnertime of more than 20 minutes.  This is a good step.  Again, slow but sure.  Presently she is still at MMC but hopefully will be home sometime this week.
-Jim

Well, to start, Isabella is doing great.  She is being the normal happy little girl that we love to see.  She has an appointment in Portland today but that is just to assess her progress and say hi to the docs down there.  They miss her sometimes.  Her weight has been up each week that she has been home and we have moved her to 35cc/hr for her formula feeds.  The very slow increases seem to agree with her this far and hopefully well into the future.  She has decided to start singing with me instead of just telling me to sing to her.  I love that.  We had a play date with Abby this weekend and they played on the swings and with their dolls.  I love status like this! 
-Jim

Isabella made a triumphant return home Saturday!  She was very happy to be home and see all of her stuff.  Sunday was her big birthday party!  Although her new Nemo doll and stroller for her baby were big hits, I think that the T-Ball set was the highlight of the birthday.  We will see soon enough.  I can't believe it has been 2 years.  On the medical front, we are starting something new, an ethanol lock and working our way back from a low formula rate.  But we are hopeful that she will get back to where she was before and be able to minimize her TPN intake.  She is almost 24lbs now and has had a little growth spurt and her little legs are getting long.  I will post some pictures soon. 
-Jim

Hi everyone!  Isabella is back to her happy self but it took a couple weeks of up and downs.  She has a new central line and is clear of her infection.  Her extended stay in the hospital is more a factor of a surgery she had on Friday.  She came through with flying colors but had to have an epidural for a few days after while she is healing.  In the surgery the doctors checked the length of her intestine (92 cm), checked the status of the colitis (better), collect some biopsies and did some trimming and tapering of a dilated portion.  She is back to being a happy little girl and is working on walking as much as she was.  I was there one day last week and she walked 13.5 laps at Barbara Bush (16 laps = 1 mile) and since the surgery she is down to maybe 1 lap.  So she has some work to do.  All in all she is doing well and we are hoping for a return home before her big 2nd birthday on Monday.  I can't believe that it has been 2 years already!  Pictures to come...
-Jim

Ok, so Isabella was admitted to MMC on Saturday with a temp of 104.3.  She, of course, has another line infection.  Today she had her line removed and a temporary tunneled central line put in that will stay in until she has completely cleared this new infection.  We have a couple changes that hopefully keep us out of the hospital for longer this time.  Probiotics and an ethanol lock for her line...I know, I have to go look them up too.  We are shooting for her return home near the end of the week or early next.
-Jim

So, after writing the journal yesterday we got a phone call from the doctor saying that they were comfortable with our skill to handle the antibiotics at home!  This has been the shortest stay that we have had once being admitted.  Isabella will surely miss visiting the Lighthouse at EMMC but was ecstatic to be home last night.  Hopefully, she can stay at home for a long time, we are ready for it.
-Jim

Well, we had been enjoying an extended stay at home over the past few weeks until last week when Isabella spiked a temp.  Back to EMMC we went to find that she has another line infection.  Luckily it was an easy one to combat and she rebounded as fast as ever.  As of right now she is still at EMMC making some new friends and getting lots of visitors.  This was a pretty standard admission for us, we don't like surprises anymore.  By the end of the week we will be headed to Portland for another checkup by the docs and another look at her intestines.  After that we will know if she will be having an extended visit down there.  Wait and see, as usual.  She has been quite the mimic this week and has taken so singing some new songs.  What a great kiddo!  She also has a professional photo shoot with Irving Corp and along with her story may be published to aid the Fuel the Care program in which we have received a few gas cards to help with travel costs for her stays in Portland.
-Jim

We are finally easing into a routine after being home for a little over a week.  Isabella is her typical happy self and is learning things very quickly.  She has decided to start mimicking what we say (so we have to be very careful) and has decided that walking everywhere is the preferred mode of transportation.  We have started classes at the local MyGym for some exercise and socialization.  We are waiting patiently until our July endoscopy and August allergist appointments in order to hopefully nail down what has been bothering her lower intestine.  But in the mean time we will be playing at home, having new adventures and growing into a beautiful little princess.

Back in the hospital - another line infection. Big surprise there! The doctors are in the process of running many tests on Isabella (on her kidneys, adrenals, etc.) to figure out why 1) she keeps getting infections that start in her gut and 2) why she keeps losing Sodium (a problem i don't talk much about, but it really affects everything). We spent a day at EMMC then made the trek to Portland. Wednesday is the big day this week - they'll be doing upper and lower scopes and biopsies of her entire intestinal tract to see what is going in there. Poor kid, she's been through so much. She's doing great - walking, running, happy, but it's really getting old for Jim and I. Hospital life is hard cause it seems like as soon as your admitted, you lose touch with everybody.

We're back home and relatively back on track (although we all know how quickly our lives can change). Still on antibiotics but that's par for the course at this point. The great news is that she's happy and walking and talking about everything. It makes us very happy as parents that she is meeting all of her milestones, and exceeding them. Her new doctor's in Bangor expected her to be a frail, sickly little baby and they were very surprised to see such a healthy looking, happy little girl <3

Hello again
It's starting to feel like this site is getting a little repetitive: hospital, home, line infection, hospital, home.....and so it goes.
We made it home from Portland last Monday, spent a day at home and were readmitted to Bangor on Wednesday after a high temp. It was a rough day - Isabella was sick, I had to make a trip to the hospital too for severe conjunctivitis and bronchitis, and it was just a crazy day all around. Things are starting to look up now, despite Isabella having another line infection. We're hoping that we caught it in time to save the line and we can just make this a speedy admission and then maybe we can make it home for a few days. It's been a rough spring - a rough year, and I think we're ready for a break!

Hey everyone
as most of you know, Isabella was admitted again this week to the Portland hospital for dehydration. Still not sure what is causing it, but we know that something in her body is pushing things through too fast and she's losing alot of nutrients. At the same time, her central line broke and had to be replaced yesterday. All in all, a crazy week, as is the norm for us. We're hoping to get her home within a few days and on a new formula to combat some of these dehydration problems. She's none the worse for wear though and is continuing to be a happy and chatty girl!

Well we made it home for our 1st Easter all together....Isabella and I escaped on Friday and had a great weekend at home with the boys. Easter was chaotic but fun with the little ones and we just enjoyed being at home for the first time in too long. Isabella is doing well overall - she still has her central line but we are getting closer to having it removed. Our goal is to have it out by her 2nd birthday (hard to believe but that's only a couple months away). We're starting to get into the "No" stage which is presenting new challenges ;-)

Isabella has managed to clear 2 of her 3 infections...she is still holding onto a weird fungal yeast infection that she grew out last week. She's on a difficult antibiotic for it - one that is causing lots of vomiting and other unfun stuff. Because of this, we haven't been able to push her formula like we had hoped. The plan right now is to put another new line in next Friday and hurry up and get her home right after that, before anything else goes wrong!

Yesterday was the craziest up and down day: first we got news that Isabella was coming home and then her labs from the day before grew another bacteria. Major bummer. Then it grew another one. So at this point she has 3 infections in her blood, all ones that originated from her gut. They're 3 different types (a yeast infection, Gram positive and Gram negative). We started her on new antibiotics and they are taking out her central line because it's too infected to save. The tentative plan for the next couple of weeks is to have a temporary line and run the antibiotics for at least 14 days. So unfortunately, she will be in Portland for another 2 weeks or so. On the plus side, we're going to use this time to experiment with her formula and "gut stuff" to see what we can do to get her off her central line completely.
If there are any family members who can visit or spend time with her next week, please let me know. We'll be back and forth a lot and are looking for some coverage.
Thanks!

Well despite much praying, Isabella has another septic infection and a UTI. Huge bummer. She's been fighting a temp on and off since Saturday but the doctors are hopeful because the overall trend is a downward temp (from the 105 Saturday morning). She's been in good spirits and has been dancing, walking and happy as usual. We're bringing her down to Portland today because we feel that they'll be able to handle this the best (in relation to her gut issues). Everybody say a prayer, keep your fingers and toes crossed and think good thoughts.........
~Jess

Hi everyone
Things have been going great at home until today - Isabella woke up with a 103 temp. A rushed trip to the ER (we have our bags packed in 5 minutes flat due to months of practice!) showed that her temp had skyrocketed to 105.6. Got admitted and began many long hours of tests (xrays, blood work, urine cultures, nasal swabs, etc). That was 12 hours ago and since then Isabella has settled in to life on Grant 8 - she's been happy, dancing, giggling and making us feel just a tiny bit less worried. *sigh* At this point it's a hurry up and wait game while we see what all these tests come back with in the next couple of days, and cross our fingers that we don't have to go to Portland. Will update the site as able.....
~J

Hey
Just a quick update - Isabella is currently home ( I hope I didn't just jinx that) and is doing well. We've encountered several small bumps in the road but are trying to manage them at home, instead of the hospital. I think the next year is going to be a delicate balance of learning how far to push her formula feeds without making her too stool out and dehydrated. We're also doing well with decreasing her TPN calories, in the hope that we can get her line out as soon as possible. It will be so nice when this back and forth with line sepsis is finally over and we can regain some semblance of normalcy in our lives.

We all successfully transferred down to Portland on Wednesday. I think Isabella was confused by the ambulance ride and then seeing her old friends, but she is doing very well. Yesterday was the first day that she was up, crawling, talking, and acting like herself again. The other good news is that her line is apparently not infected - the infection was just in her blood. She is responding well to the antibiotics. The plan now is to change some of her gut meds and push her formula feeds, in the hope that we can get off this line as soon as possible. She will be down in Portland for at least a couple more weeks......

Just a brief update for all of you who have been wondering:
We brought Isabella to the E.R. Sunday afternoon and she was admitted to the Pediatric ICU (PICU) for dehydration and sepsis. It has been a very scary few days cause Jim and I have never seen her this sick before. She seemed to stabilize overnight on Sunday and then yesterday she started to go into shock and was able to be immediately stabilized. Understandably, we were very scared cause this seemed to be a whole new ballgame. Dr.Woods, the Intensivist in the PICU, explained that her sepsis was so bad that her body was having a hard time finding its equilibrium and was going to extremes - hence the shock. As of last night, her kidneys, cardiovascular system and other major systems were close to normal again. They are keeping a very close eye on her labs and she seems to be on the upswing from that scary mess.
The doctors think that a bacteria in her gut invaded her bloodstream and caused this. Luckily, her actual central line seems untouched, so there is hope that we won't have to replace it. Our plan for the next few days is to stay in the PICU in Bangor, get her stabilized, then head to Portland to be admitted. The goal in Portland is to take a close look at her intestinal system and push her hard on the formula, so we can hopefully take her off the TPN asap. Our hope is that she can get off this central line asap and we can stop having scary days like this.
Either Jim or I will always be at the hospital and visitors are welcome!!

Hope everyone had a nice holiday season - ours was busy, but we were very happy to all spend it at home. Such a change from last year when Jim and I made the trek to Portland for Christmas day and spent our holiday meal at a chinese restaurant!
We are continuing our focus on getting Isabella off her TPN. So far, so good *fingers crossed*. Currently, her TPN has been decreased in calories and she is only running it for 16 hours a day. Her formula feedings are currently at a record-breaking 35cc/hr and we are moving steadily ahead. Up to 24 pounds!!!
Isabella is a typical 16 month old is so many ways - she is very active and very assertive. We're not complaining though, that's what's gotten her this far!

Isabella came home today! I'm starting to lose track of how many times we've had these welcome home celebrations, I think we're close to 6....
She had a new central line placed yesterday, we're lucky that she still has some good vessels with to work with. The plan is to keep her on antibiotics til next Friday, which means a long sleepless week for us due the antibiotics rotating schedule. But very worth it! She's still at 29cc/hr for her formula and we're starting to experiment with some gastro meds that will help with the spitups and frequent stools. So far, so good. Our next goal is to get a full 6 hours of all the pumps so we can have some normal kid time. Luckily, she's a very happy baby and never complains too much!

Thank you all for the outpouring of well wishes and support we have received the past couple of days - and all the time!
Both of Isabella's IV's went bad over night so she had to go into surgery early this morning to receive a new temporary central line in her groin. What a tough little girl huh? I was able to go into the OR with her and hold her as she fell asleep. Kind of a weird and scary thing to see but nice to be there (I guess we've earned the privilege after going through 16 surgeries)!. She's doing well now and her blood cultures haven't grown anything yet. The plan now is to have a permanent line placed this week or early next week and then home! Cross your fingers!!

As many of you have heard, Isabella was transferred to Portland last night. The latest round of lab cultures had shown a secondary infection growing in her central line and we were faced with the tough decision of what to do (stay in bangor and try to treat or go to Portland and explore other options). We opted to go to Portland and we took an ambulance down last night. Isabella handled it well and promptly fell asleep. They removed the infected line today and she was given IV's in both of her feet that are temporary and will hopefully last the weekend. The goal is to put in a PICC line on Monday and then a brand new central line in another week, once the infection is cleared up. The hardest part right now is that she can't be on her feet, which is very difficult with a very active 15 month old. We're thinking that it's going to be a long weekend with them...

As some of you know, Isabella was admitted to EMMC over this past weekend for a fever of 104.7 on Sunday. After hours in the ER, many tests and labs, they found that she has another blood infection ;-( This will be her 8th....amazing to think about. Right now they've isolated the culture and have been treating her through her central line with multiple antibiotics. We're happy to report that she hasn't had a fever since last night and seems to be in better spirits today. We're keeping our fingers crossed that we have been able to save her central line and that we won't need to replace it (which would require a stay in Portland). She is at EMMC on the peds floor, and visitors are welcome if you coordinate with us.....
Make sure to check out our new thanksgiving pics - more to come later.......

Hey everyone
Hope you all are enjoying the cool fall weather! We've been busy, as you can see from the new pics! We had a fun Halloween and enjoyed a family party on base. James was James from Thomas the Train and Isabella was a little skunk. For those of you who missed her debut  in the Penobscot Times, i have a few extra copies if you would like one. James also had his picture in the Bangor Daily News on voting day!!
Jim and I were able to get away for a great mini-vacay to Las Vegas last weekend. It's been such a long stressful road this past year and this was a good chance to get away and decompress. Isabella stayed with Grandma and had a great time! She is continuing to do well and we are hoping to have her pump free for 6 hours a day, instead of the 4 hours now - hopefully by Thanksgiving. She is getting so big and fun. The only obstacle right now that we are encountering is her refusal to eat. We've been working with an oral therapist and we're hoping to see some progress in that area soon!

Sorry it's been awhile!! Life as usual, is very busy!
Isabella has continued her progress. We've had a couple of setbacks with an ear infection, a virus and some harsh antibiotics so progress has been slow in regards to her gut issues. We'd really like to push ahead her enteral feedings but can't do that too fast. We're currently at around 25cc/hr!! Isabella is now saying lots of words and loves to give hugs to her family and stuffed animals. It's super cute.....
We've had lots of great family time lately - James had his 4th birthday and we celebrated with a Halloween party. He continues to be a great big brother with Isabella. They truly love each other and it is fun to watch ;-) Check out the pics!!!

Isabella is doing great - a few minor bumps here and there, but is adjusting well to being home with the family again. We've had some fun family adventures apple-picking and pumpkin patching at Treworgy Farm (a great place to go if you have kids). Her feeds are still at a record setting 24cc/hr and we are continuing to push her oral eating. She is absolutely not into it, but we're sticking it out with having scheduled highchair time with different varieties of foods (cheerios, noodles, etc). She is getting so big - just over the 19 lb mark!!!

Isabella and I made the long trek home again today.....we're keeping our fingers crossed and hoping that she will remain stable enough to be home for the long haul. She's at 22 cc/hr for her feeds - which once seemed unheard of!
As Isabella stabilizes, we plan to use this site to keep family and friends updated on our little family, not just Isabella. James recently started Pre-K and is also playing soccer! Jim and I recently started our Brewer Rec volleyball leagues and life continues to be busy busy busy in our neck of the woods~
~J

Isabella had her first negative blood culture - yay!! Good news - it means that she is fighting this nasty double infection. The plan now is to continue on antibiotics for another 12 days in Portland and then replace her central line, which will mean a minor surgery. Also, we are at a record-breaking 19cc/hr for her formula feeds. We're almost at the point where we can start dropping down on her TPN - which will be a huge, life-altering change for all of us.
Keep your fingers crossed!

Hey everyone
I'm using this post to say to please continue checking this website for updated information. As most of you know, during the times that Isabella is hospitalized, I try to keep it updated at least twice a week. More if there is urgent news that family needs to know. It has recently become very hard to be constantly asked how she is doing (16 times yesterday)!! We truly appreciate that everyone cares, but it is sometimes difficult to revisit the issue over and over. As parents we do the best we can while dealing with the mental stress of making tough medical and financial decisions, and the physical stress of long drives, sleepless nights, etc. Trust us, we won't get hurt or offended if you don't ask how she is doing, we'll probably breath a sigh of relief that there seems to be a little normalcy in our convos with friends and family.......
That being said - if an emergency happens (like last weeks blood infection) we'll try to spread the news from family (and facebook sometimes). Isabella is still doing well, still in the hospital, and will likely be there for at least several more weeks. We are currently fighting that double blood infection and need to keep a close eye on her to know that it has been cleared. She continues to be happy, strong, and very active. She now says "Mama, Dada, Uh-oh, Elmo, Duck, Ride, and Go" She's also been experimenting with food, which is proving to be quite the adventure!!
~ Jess and Jim

We found out today that Isabella now has 2 different infections growing in her line - a Gram positive and a Gram negative. The two different types mean that we need at least 2 different antibiotics. We're currently running Vancomycin but haven't had any luck killing the bug. Unfortunately tomorrow we have to remove her central line, so she'll be without any TPN nutrition (which account for most of her calories) for awhile, probably at least until we start getting negative blood cultures. This whole set of events means that we're looking at some more time in Portland - a couple of weeks at the very least. If anybody is in the Portland area, feel free to visit since Jim and I can't be here all the time.

Once again, sorry it's been awhile. In the past 2 weeks, we've celebrated Isabella's first birthday (thank you to all) and readmitted her to the Portland hospital again. Unfortunately she became septic last weekend and we had to readmit her on Monday. It's crazy that it keeps happening, and we're frustrated because we would just really love some normalcy for a bit (say, longer than 3 weeks). On the plus side, she had a great birthday and has gained 1.5 pounds in the past week. The other positive (if you could call it that), is that the infection didn't originate in her gut but came from her central line. This gives us some hope that her gut is working better than we think at fighting bacteria, and that we probably have room to play around a bit. In addition, her intestines actually look kinda normal (in comparison to 6 months ago), and are showing very little dilation. Without this dilation,we are able to push her oral intake more, and hopefully will can delay a possible future STEP procedure.....
~J

Phew, it's been a busy couple of weeks! As you can see, Isabella recovered from her nasty bout of sepsis and was able to come home last Monday. Luckily, we didn't miss out on too much of our Point Sebago vacation and were able to head straight down. Despite the round the clock med schedule of new antibiotics and the challenges of having baby with multiple tubes at the beach, Isabella loved camping. She did great sleeping in the camper and thankfully had no medical issues to deal with! While we were down there, we made a trip to see our NP Janice Dudley in Portland to iron out some of the medical stuff from the past month (i.e. the inability of the Bangor lab to send Isabella's lab values to her Portland docs, etc.). We also made a tentative plan to do another STEP surgery in a couple of months. Sad but necessary. Even though we know that it will mean another hospitalization this winter, we know it is the best move for Isabella. Without it, she is likely to keep getting infections that originate in her dilated bowel. For now, we are concentrating on helping her gain weight (goal:22 lbs) by increasing her nutrition by 25%/day.
It's hard to believe that our little girl is going to be 1 in a week!!

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So it's been a crazy few days.....on Thursday night Isabella spiked a temp of 102.6. We rushed her into the Bangor ER (and got right in thankfully, bypassing the 7 hour wait). After 4 hours we learned that 1) she most likely has an infection 2) her sodium levels were critically low at 121. which is entering into dangerous seizure territory and 3) all her labs had been chronically low for the past couple of weeks. Once we got over hearing this news, Jim and I were very upset that nobody had caught the downward trend. We have labwork weekly that is sent to Portland and it wasn't noticed...
So we ended up in the PICU. Today we're due to move up to the 8th floor. So far we've been able to stave off going to Portland. It's looking like she has another septic infection ;-(  but probably not from her central line. Even though her line is infected, we are hoping to save it since she has such limited access at this point. As far as her sodium levels, they are starting to improve. She's starting to act like herself again, and has been up and smiling today.

Check out our newest summer adventure pics up now ;-)
Also a quick update from the past week - we've had to continue to tweak her formula. At the moment it is only accounting for about 25% of her total caloric intake - even less if you consider all the vomiting lately. When we speak with the docs again,we're going to have to find another way to up her calories while trying to wean off the TPN. I've spent a lot of time tonight reading up on other Short Gut kiddos and it seems to be a running theme - trying to find a good balance. Some of these kids only have about 10% of their bowel (while Isabella had about 20% at birth, now slightly more). Despite at one time having the shortest gut in the state, we continue to feel lucky with how far we have come.

Hey everyone
Sorry it's taken me so long to update the site, life has been very busy lately! Isabella is continuing to do great. She went nearly 2 weeks without any vomiting and her docs were so happy that they made some adjustments to her formula (increasing the calories). Unfortunately this led to vomiting again this weekend. On the other hand we've also been out in the car more and we think that she may be getting motion sickness. I guess time will tell.
It's been fun to take her out and do normal baby things. She loves the swings at the park and to go on long walks. She even rocked her first swimsuit and boat ride this weekend!
We were very happy to meet her pediatrician for the first time also and he was amazed at her progress. He had expected to see a very sick and weak little baby and what he saw instead was a chattering smiling Isabella. His name is Dr.Jeff Milliken and we were very impressed by him. As far as her Portland care goes, we are still traveling down there twice a month, and will continue to do so for awhile. Our personal goal right now is to try to wean her down even more off her TPN, and eventually just have her pumps running overnight (instead of 20 hours/day). On a positive note, we also got the ok to start introducing other foods to her - so she can experiment with food socialization and textures. So far she's had little nibbles of ham (yum), carrots (not a fan), and mashed potatoes (ok).
Pics to come soon!!!
~jess

Isabella is home after last weeks visit to the hospital. She came home with extra antibiotics to help ward off any infection that may be lingering. I get the feeling that we are starting a new chapter in her medical care - meaning that we are starting to think about long-term goals and such. Ideally we are hoping to have her off all her pumps by age 2. This would be awesome and is attainable as long as she doesn't get sick again. The problem is that she has certain bacteria growing in her body (like we all do), and this bacteria can become dangerous and grow if her immune system becomes weakened from a cold or virus. This is why Jim and I are being suck sticklers about constantly sanitizing, and making sure visitors understand this too. That being said, we are open to company!

As most of you know, Isabella made 2 return trips to the hospital this past week. Last Monday we spent in the ER all night after excessive vomiting, followed by a trip to Portland. After a quick return home on Tuesday, we readmitted her on Wednesday after a lab result came back with a possible positive central line infection. After more tests, we still aren't sure, but she is doing great with no temp, no vomiting, etc. She is coming home again hopefully tomorrow, on a full course of antibiotics for the next 9 days. This presents a logistical headache, with the antibiotics needing to be run every couple of hours, and since they need their own special pumps. Regardless, we are determined to get her home asap. She's doing great, and has been handling the transitions well, with some minor separation anxiety from Mama and Daddy. Overall, the nurses at Barbara Bush love her and we've been able to spend lots of time with her this week. She's also learned to pull herself up in her crib, and seems to proud of herself when she does it. Too cute!
New pics to come soon, as soon as I can get my new laptop up and running!

As most of you have heard, we are all home!! Isabella came home from the hospital this Friday and is doing very well. We still have the pumps (2), the meds, and nurses in and out, but we are doing great! She seems to be very happy, and has handled the transition much better than we had thought. Our plan is to still go down to Portland once a week, for her clinic appointments. They'll be able to do alot of her dressing and lab stuff down there. We'll have to do the weekly appointments down there for most of the summer, but this is still waaaaay better than our living at the hospital.
We are welcoming visitors, and are pretty much homebound for a while. If you'd like to stop by and say hi, give one of us a call, or email. I'll continue to update this site regularly.

After a very scary week, Isabella seems to be on the up swing. No fevers, shakes, or anything else nasty. We've had alot of people ask when she is coming home, and we still have NO IDEA. We hope to have her home at some point in the next month, but our main focus is on getting her healthy again, and stable. It's hard to have to repeatedly say that we don't know, cause it all hinges on how she does day to day. Also, when the time comes, I think Jim and I will just take her home and not tell anyone. We've been jinxed way too many times! So overall, we are hoping for a good couple of week. She'll be having another line replacement in the next couple of weeks and will progress from there. Thankfully, she continues to be a very happy and cuddly baby. We really couldn't ask for more.

~Jess

So it's been a crazy week....Isabella has not one, but two infections growing in her blood. Both are different types, and need to be treated differently. They are causing some nasty side effects, such a a high temp and muscle spasms. We're crossing our fingers that the antibiotics are working. In the meantime, she's also had a blood transfusion to help with anemia caused by daily blood draws. Through it all she's been pretty sleepy, but still her happy self - babbling all the time and also popping up her first tooth! We'll keep everybody posted as we know more

~jess

Hey everyone,

Sorry it's been a few weeks since I've updated the site, time gets away from us sometimes. We've been dealing with a very nasty and very scary infection for the past week. It's the same infection that Isabella has had, but it keeps attaching to her lines and further infecting. Last Wednesday she spent a night in the ICU after having a very high temp. She has also had 2 line replacements, and will most likely have another this week. The goal is to use peripheral inserted central lines (PICCs) for her to get her TPN. We are waiting for the infection to clear up before we place another central line in her chest or neck. Currently, she is being treated with multiple antibiotics. In addition, she tested positive for VRE. This just means that she has a drug resistant bacteria in her body. It's nothing to be alarmed about, but it does place her on certain precautions in the hospital. For us, it means that we can't leave her room and go to the atrium or playroom with James. We're kind of stuck in there. Huge bummer. We're trying hard to be there as much as possible, and are asking family to be there for days when we cannot. If you're interested in visiting, please let one of us know. Again, let me just clarify that she is stable, and is feeling alot better. Her temp is more regulated, and she is up and active again. All she currently wants is lots of snuggles!

It's a good thing that Jim and I have patience, cause it is defnitely being tested! Isabella got her infected line replaced today, and now the waiting begins to start getting the signal that her infection is clear. Basically, a clot formed in her chest months ago and began attracting bacteria, which then led to it attaching to her lines. The course of action right now is to give her chest a break and treat vigorously with antibiotics. Yup, that means at least 2 more weeks there. Yuck.

On the plus side, Isabella is proving to be such a trooper. Check out some of the new pics above and you'll see what I mean. She's always full of smiles, and those big blue eyes will get you every time ;-)

We are keeping our fingers crossed that Isabella can come home soon...as in, immediately! The only thing currently holding us back from packing her bags is a nasty line infection (again) that she caught this week. We'll find out today if the infection has been contained. If yes, then she can come home with us. If not, we'll have to do some tweaking to her line and run another course of antibiotics.

We've been lucky this week and have been able to take her on passes outside the hospital. She loved the flowers, the wind, and playing in the park...

I'll post news asap if she is home, so visitors can come!!

;-)

Check out the new pics up of Isabella and family - most of them were taken on Easter. We were lucky enough to steal her away from the hospital for a few hours and take her to lunch. As you can see, she enjoyed lots of snuggles with family!
She's continuing to do well post-op. We're working on starting the formula again soon, as long as she continues to do well. She's finally starting to put some weight on also. She's been looking really long (has grown 1/2 inch) and lean lately due to the surgery. But as always, full of smiles!!

Also - I've been playing around with this website and just added a Question and Answer section at the bottom. We're still ironing out the kinks, but feel free to ask questions and I'll answer to the best of my ability (And no, we still have no idea when she is coming home)!

Isabella is now 4 days post op and is recovering well from her surgery... the docs went in and replaced her central line, widened some too small areas of her intestine, lysed some extra growth off and created 4 new STEP incisions - bringing her to a total of around 126cm intestine. It's looking like she'll finally be closer to coming home within the next couple of months, and hopefully will stay out of the operating room for another 6 months or so. Any remaining surgeries at this point will probably be to just tweak and trim her surgical incisions...

That's it for tonight - I'm feeling totally wiped. It's amazing how tired hospital life can make you! Thanks to everyone for all the wellwishes. Our supporters never cease to surprise us...I'll update again in a couple days.

~J

Isabella is continuing to do well, but any hopes we had of getting her home were crushed today when the docs made a tentative plan to STEP again next Friday, April 17th. This is only a minor STEP, 2-3 staples at the most, and will also coincide with a central line replacement, and a widening of her anastomosis (her original surgical site that helps connects portions of her intestines, and which is currently too small and causing a backup). This isn't a very big surgery, just unexpected. This is also bittersweet news: Good in that we can hopefully avoid a larger surgery in the fall, and because she has no major dilation in the previously stepped areas. Bad cause it will most likely keep her in the hospital awhile longer. But I guess we'll just have to continue practicing patience. Overall, she is doing very very well. She can hold herself while leaning against an object, and she is proving to be quite the gymnast in her crib. She is also very happy and most people are amazed at how smiley and giggly she is. What a little ham....

Isabella has had a great week, after a scary weekend last weekend. After a double ear infection and central line infection, we were worried that she would be set back. But nope - she's a trooper! She's tolerating her 6cc/hr pretty well and her belly is looking good all around. Finally too, it seems that she is growing into her body, since she has gotten taller with fun little baby rolls! 
She finally got the ok from the docs to go off the floor with us, so we hightailed it out of the ward this weekend and spent lots of time strolling around the hospital. She loved to tell babbling stories to all the people we met on our walks. She also clearly said "Daddy" and it was so clear and unexpected that it totally took us by surprise. Today we had a fun visit with our cousins from Boston, and our aunts from all over. Isabella met her second cousin Eva (5 1/2 months) for the first time and they were very very cute together.
The tentative plan is still probably another couple of weeks, and then homebound1 Keep your fingers crossed!

Well Isabella is finally getting over a nasty cold, which had really made it difficult to make any progress. Currently she is running at 5cc/her and is tolerating it ok, with some vomiting here and there. Our tentative plan is to do another Upper GI study in the next week and check the degree of dilation, and then probably home in 2-5 weeks. The docs have a goal to have her off her pumps one year from now, but I think that is very optimistic. It's also looking like we'll probably have to go in and do another STEP in 3-6 months to help with the segment of small intestine that he didn't do last time, and which is causing some dilation problems right now. Jim and I would really like to have her home for the summer first, and then maybe think about the surgery in the fall, if it is needed. Obviously this would be difficult, because by that point she'll be a year old, and it would take some creative time management to be with her all the time ;-) (Assuming that surgery would also require a couple of months in the hospital also)....

She's been chatting in baby speak constantly, and Jim and I think she said "Dada" last week, but it was hard to tell! She's also been saying "mummum" when she cries or needs something - which makes it very hard to be away from her those days we are at work and can't be with her.

Life has been busy lately, with back and forth trips to Portland, and Jim and I both fighting getting sick....
Isabella had a little bit of a rough week last week with lots of vomiting. Her formula was just too much for her to handle, so now we are are running at a very slow and stable 2cc/hr. It's slow, but steady, and her belly doesn't seem as stressed as it did. The docs performed xrays and Upper GI studies, which showed that the STEP is working, but the 1/3 of her small intestine that they didn't STEP is still dilated. This isn't a big surprise, it just means that we may have to STEP again in a few months....
Developmentally she is full of personality! She giggles at everything and is just the happiest baby that I've ever seen! She sits up, rolls over, and scoots all around her crib.....very cute!
Check out the new pics!

Isabella has had a great week...she is now up to 45 cc (1.5 ounces) of her formula every 4 hours, and then running continously all night at 10cc. She is handling the formula well so far but is still refusing to take it by mouth. She may start experimenting with baby food in the next week or so, to see if she likes the taste better. Her docs continue to be happy with her progress and say that we can start talking about discharge in the next couple of weeks. Keep in mind that this is just talking, not outright planning, so it could still be a month or more! But progress is progress.

Also, we were very lucky to receive a gift tote from the Love Grace Society. They are a Maine based organization started by a family who had a daughter at the hospital. We were lucky to receive a nice gas card, toys, information, and a toy for James also. We've also been very thankful to continue to stay at the Ronald McDonald House for the past 6 months. These organizations are dependent on support and donations, and we thank our family and friends who have donated in Isabella's name. She appreciates it!

Here are there websites if you want to check them out:

www.lovegracesociety.org

http://rmhportland.org/

Isabella is finally acting like herself again, and she is free from all the surgical (nasal, gastric0 tubes that she had all weekend. This is good cause she is very active and playful, and just wants to be out of her crib and playing! She had an upper GI study today which showed no dilation in her bowel, and a good straight line through her intestines. The docs started her on pedialyte by bottle (which she hated) and will start the formula at 30cc every 4 hours by day tomorrow, then will run it all night. The problem right now is that she does not like taking her bottle - we're unsure if its the nipple, or just the process of it, but she'll be having a consult with a feeding team tomorrow.

Isabella made it through her surgery well...she's been pretty sleepy since and is just now starting to act like herself. She looks really good, they managed to get in through her original incision site so she won't be too scarred up! Basically what they did was go in through the incision site and pull out her intestines. They did alot of measurements and found that the small bowel was super dilated (6 cm wide, should only be about 1 cm wide), but that her intestines had grown to a total length of 79. This was great news, since she was only born with 35cm, and they were only expecting around 60cm at this point. So they took that very dilated portion and placed 13 staples at intermittent sites to create more surface area. This led us to a grand total of 106cm of bowel - this is great great news. In addition, they did some minor tweaking and trimming to make her original surgical connection (between the small and large bowel) a bit bigger so things can pass through.

We have no idea yet when she'll be well enough to come home - my hope is by Easter. She'll most likely start her formula in the next 5 days or so and we'll know more then.

If you'd like to visit, don't hesitate, just let us know!

So the big day is coming - next Wednesday, Feb 18th. We've been in a scramble all day trying to figure out the logistics of it all since we had planned on Friday, but the docs want more surgeons there so we had to give into their schedules. They are still pretty hopeful about the outcome, and are itching to do it soon, since she's been dehydrated and vomiting the past couple of weeks. The vomiting is due to the dilation in her small bowel, and the dehydration is caused by the vomiting - it's an endless cycle! We really appreciate everybody's thoughts and prayers for her - and concern about the upcoming surgery. We will update the family as soon as we hear any news, and will rely on them to spread the word on the surgery's success. I'll also try to update the site within a couple of days, depending on how things are going.
Despite the vomiting,and her new aversion to drinking her formula, she remains a happy and engaging baby. It's fun to watch her become so interactive and fascinated with the world around her. She is still right on track developmentally (and ahead!), except for her belly time. She's so strong though that we're still thinking she'll bypass crawling completely and walk first. Her current trick is doing mini back flips out of her bumbo seat, which makes me nervous. And, as always, grabbing grabbing grabbing at her lines!

We'll be posting new pics asap (they've been slow coming due to a broken camera). Don't be surprised if she looks a little different - she lost all her hair, and now it's been growing in a light blond. She's also just abound reached the 11 1/2 pound mark!

Stay tuned!

Well the good news is that Isabella is most likely going to have the STEP procedure done in the next 2-4 weeks. After much inner debate and opinion gathering,we feel that this is the best option for her. Initially we were feeling nervous because there is a high rate of complications when performed in Boston. However, Janice (our awesome nurse practioner) pointed out that usually only the sickest kids (i.e. very shortened guts, immunosuppressed) get sent to Boston from all over the world, so of course they're rate of complications is higher. The team also pointed out that Isabella is actually a really healthy and happy kiddo, and she is a prime candidate for STEP. What's more is that Dr.Neilsen has had multiple experiences with STEPS, either performing or assisting,and they have all been successfu. The recovery from the STEP can be long, but worth it. I'll add some info about it to this site...
So the bad news is that Isabella most likely has to wait it out in Portland until surgery day comes. We really wanted her to come home first but the docs are being cautious, since an infection or something else could delay her surgery if she picked up something from home. So I guess we are looking at another couple of months in Portland. As usual we are down there most every Friday through Sunday, and scattered nights during the week if anybody wants to visit. She loves visitors! It's funny because you would never know that she has so much going on internally: she is such a happy and personable little baby. Jim and I were soooo proud of her this weekend cause she learned to sit up on her own and can hold herself sitting up for several seconds. This is a great milestone, and early for her age. She's also begun scooting around on her back and kicking off with her feet - she's eager to move move move!
we'll keep everybody posted on the big surgery day!

Isabella has been doing better, the past week or so. We sat down with a new doc on the team - Dr.Neilsen. He's been a surgeon for close to 20 years and has worked with short gut babies in the past. He seems pretty hopeful about our options. Now that she has kicked the bacterial infection, we can start to think about lengthening her bowel. I think we're going to seriously consider having the STEP procedure done, which will add about 10 cm or more to her bowel. To put it in perspective, she only has about 55 cm (up from the 35 she was born with). Most babies are born with close to 200cm. That's a huge difference! Most likely we'll opt to do this in Portland, since Dr.Neilsen has performed one of these before (yup just one, but it was very successful)...
She's advancing pretty well with her feeds - up to 3 ounces per day. Probably in about 2 weeks she's going to have her central line replaced. It's getting kind of old and leaky, and will need an overhaul, which involves minor surgery. We're hoping to have her home soon after that, shooting for 3 weeks from now. Then later this spring we'll head down again to Portland for the STEP.
Check out the new pics!!

Isabella seems to be fighting like heck against whatever is going on in her little body! She seems to be recovering from the dehydration caused by the vomiting and stooling. Her colon is working in some capacity to reabsorb her electrolytes - that's a good sign!  Her gastric pH was only 2 meaning that the ranitidine (used to decrease secretions) is not quite doing it's job so we have discontinued that and started her back on Prevacid.
She is now day2 of 7 for bacterial overgrowth treatment and as long as she continues to do well, we will start feeds on her beginning of next week....slowly....
She is bright eyed and happy this morning and was chomping on her
pacifier. Progress may seem slow but it is still progress...

Isabella has hit a bump in the road so to speak: her small bowel has become more dilated due to a bacterial overgrowth in the intestine. The doctors were unaware of this when they started her on her formula feedings and unfortunately this probably accelerated it. For now all feeds have stopped and we're probably just going to let her belly rest for a couple of weeks. If the dilation doesn't improve then we have to consider the next step, which could be either:

1)another ostomy

2)a STEP procedure, which involves resecting the bowel and making it longer. Unfortunately this has a low success rate and with this she wouldn't be able to feed for quite awhile.

3)another form of bowel resecting, I believe it's called the Santuli procedure.

For now we are exploring our options and are considering contacting Boston for a second opinion. If we chose the STEP procedure, it will be done down there, which would entail us camping out in beantown for an extended time

we'll keep everybody posted on here as frequently as we get changed into. Make sure to keep checking!

Isabella is up to 3cc/hr now for her formula - its been great to see her advance so quickly. We've even been lucky enough to start a bottle today again, since its been almost 3 weeks since she's had anything orally! The big focus right now (and what is mostly keeping her at the hospital) is healing her wound. It's a pretty big incision site and the docs have been keep it clean since her minor infection has been resolved. Now we just have to wait for it to heal.
Stat tuned!!

Isabella is doing well - she now weighs 9lbs, 10oz!! The great news is that she is pooping and moving things through her newly reconnected intestines. Her wound site is healing nicely, it had a slight infection in it, but her doctors have been able to squeeze out most of it and aren't overly concerned. Last Friday they started pedialyte at 1cc/hr into her g-tube but had to stop that over the weekend, since her drainage was too much back out of the g-tube. This basically means that the stuff that was getting pumped into her stomach, was just sitting there and not moving through. Soooo we gave her belly the weekend to rest and may start again today.

She had a great Christmas - she was spoiled with lots of gifts. (Thank you everyone)!! The hospital staff spoiled her with lots too! She's been really interactive lately, now that she is coming out of her surgery drowsiness. She smiles when she sees Jim and I. She's also been fascinated with playing with James and has been reaching out to grab and play with his toys.

Alot of people have been asking us when she will be coming home....we really don't know. We were told that this will be a short admission, probably not longer than a month. Yet, its hard to put a timeline on it. The only thing we do know is that once she officially starts the formula, or the pedialyte, she should advance pretty fast. It's just a waiting game....

Isabella came through her surgery with no problems at all. She's been pretty sleepy since then and has just been resting and gaining her strength. Her docs are pretty happy with the way the surgery went: they only had to sacrifice a couple of centimeters of intestine when the reconnected. They don't know how much intestine she has grown since birth, but they think its a good amount, since no signs show otherwise. The plan for the next few days is to restart the TPN and wait for it to move through her system and poop!! Once she can do that then we can restart the formula and move things along. She is also still has a foley catheter and an epidural pump which will hopefully be removed in the next day or so.
We'll be traveling down to see her Christmas morning through Sunday, so if anybody would like to visit, let one of us know!
Merry Christmas!!!

Isabella is settled into the hospital again - we brought her down on Thursday eve. The nurses were very excited to see her - any doubts we had about her missing us were erased when she began smiling and cooing at her nurses! She seems happy to be back, and she is definitely being spoiled. This weekend has so far just been spent waiting....Isabella is on bowel rest and is just killing time until Monday morning. She had some last minute tests done yesterday and xrays confirmed that she is definitely ready to reconnect her bowel. After the reconnection on Monday, the next step will be tackling motility issues - aka, how things move along her intestinal tract. Since so much of her intestinal tract formed outside her belly, it's really a mystery as to how well things will move along.
She is turning into a funny little diva and will have long conversations with us involving lots of coos and giggles. She has also learned to blow raspberries back at us, which she thinks is hilarious. She is very strong for her age and can hold her head and body up with little support. Just amazing for a little girl who has been through so much and is just about 4 months old.

Jim and I received some bittersweet news - the doctors are ready to go ahead with her reconnection surgery on 12-22. The reconnection means just what it sounds like - they are ready to reconnect her small and large intestines - which means no more dealing with the messy stoma and refeed. For Isabella, this is great news, as she is progressing so fast. For us, it means another return to the hospital and spending Christmas there with our little girl, instead of with our family. We plan on bringing her down to Portland this Thursday, the 18th, and helping her get ready for her surgery on Monday, the 22nd. We'll then travel back down on Christmas day and stay the weekend with her. The doctors are hopeful that things will progress fast - they should be able to restart her formula soon, as it only takes about 5 days for things to start moving through the intestinal tract again. We're hoping to have her home within a couple of weeks after that.

Isabella is continuing to flourish at home - though it has been a bit of an adjustment dealing with the pumps and people coming in and out of our home! This week we've finally seemed to settle into a regular routine, and soon her private duty nurses will come in to help with her medical needs during the day - what a big relief!

She had her first checkup yesterday since leaving Portland. Her short gut team was very impressed with her progress and had alot of praise for how we are handling the messy business of her refeeds. Her weight is up to 9lbs, 5oz, and her labs are looking great too - all great news. The big news is that what we are doing now with her ostomy/refeeds seems to be working very well and they are starting to talk about scheduling back the reconnection. This is surprising, since we weren't planning on this til maybe spring, and the thought of being disconnected from the pumps even earlier is a dream come true. We're keeping our fingers crossed that it will happen! This will mean another hospitalization for Isabella in Portland, but hopefully this time it will just be a couple weeks, instead of months.

Developmentally she is continuing to be ahead of the curve. Despite everything, her body is really strong and she likes to bounce and exercise her arms and legs. She is also turning out to be a little social butterfly and likes to giggle and coo and whoever is around.

 

Jim and I managed to pull off an awesome surprise for our families - we brought Isabella home!! She is here for good (well at least til her next planned reconnection surgery in the spring) and is doing great. We went to Jess's family's house for Thanksgiving and surprised everyone - they were shocked!! And ecstatic - for my dad, it was the best birthday present ever. It reminded everybody that there is so much to be thankful for.
At home we are adjusting to having a little one that comes with pumps and constant feedings. Luckily she can be off all pumps for 4 hours a day, so we can visit and walk freely around without carrying the pumppacks.  We're lucky to have support from daily visiting nurses, and both of our moms who have pitched in to help. So far, so good....
New pics will be posted soon! ;-)

Isabella has had a great week and is just over 9lbs! She has been cycling her TPN in the hopes  that eventually she can be pump free for awhile. Her formula is continuing at 5cc/hour and she is tolerating that well. Developmentally she is doing great and has just begun swatting and grabbing at things. Its hard to believe that she is now 3 months old!

 Isabella is up to 8lbs, 15 oz. Overall she's had a great week, with some ups and downs on her formula amount. She is meeting all of her developmental milestones (giggling, recognizing, grabbing, etc)., on time. This is a huge relief since hospitalized babies tend to fall a little behind and then catch up. Her nurses were great advocates for her and pushed her to get seen daily by childlife specialists so she can stay right on track. We are hoping to get her formula at least into the double digits per hour (since it is mostly through an IV pump) before we take her home, but her doctors have said that she could go home on as little as 6ml/hour. As of right now she is at 2ml/hr, but it fluctuates almost daily. We have begun learning her tube and stoma care, in the hopes that we will feel completely comfortable with it when we take her home. We are still pushing hard for Christmas or earlier!!

Isabella is holding steady at 8lbs, 6 oz.  She is becoming much more alert and full of personality as she grows. The great news is that she is meeting (and ahead) of all of her developmental milestones - she just learned how to roll over and discovered that it is fun to grab the tubes in her stomach! Her formula was decreased to 2cc/hr - she had reached 6cc/hr but it was a little too much for her belly to handle. (To put things in perspective, there are 30cc in 1oz). We are hoping to have her climb up again this week. Her liver enzymes are also looking good, and we are hoping to begin cycling (running in 4 hour blocks) her TPN soon.

Isabella now weighs 8 lbs, 4 oz! Her doctors are very happy with her progress and she is now getting about 4 oz of formula per day. We are hoping to have her home by Christmas

5/20/2009 4:28:06 PM - 002021594125
She is so cute! Hang in there your doing a great job! She's a lucky girl to have you for a mother.
Love
Aunt Dani

5/10/2009 10:21:57 AM - 002037752628
Happy Mother's Day Jessie! You should be called "Mother of the Year".
Love, Mom

4/22/2009 11:16:00 AM - 002065580241
I'M SORRY TO HEAR ABOUT YOUR COMPLICATIONS. YOU SURE DO HAVE A BEAUTIFUL FAMILY. YOUR DAUGHTER IS VERY FORTUNATE TO HAVE SUCH A SUPPORTIVE & LOVING FAMILY.

2/27/2009 8:44:57 PM - 002037752628
I would like to do another collection for the Ronald MacDonald House in Isabella’s name to thank them for everything they have done for Jess and Jim. I can’t imagine what life would have been like for them it the RMH hadn’t been there. They always need household items, food, gift cards, etc., and are very much appreciative of any donations. This is a link to their wish list: http://rmhportland.org/giving/donate-items-our-wish-list If you wish to help, please drop off your donation at my house, Jess & Jim’s, or Bert & Elaine’s house. The deadline will be March 18th so we can deliver them that weekend. Thank you. Kathy Ouellette (Grandma)

2/24/2009 9:03:49 PM - 002039842357
She is such a happy and strong little baby.  We can't wait to have her home.  But in the mean time, she really appreciates all of the thoughts and prayers from everyone.  Thank you so much!
Jim

2/20/2009 5:06:23 PM - 002058517668
So happy to hear the wonderful news of the successful surgery on Friday.  I will certainly keep the prayers coming for her quick recovery and return home.  She's a cutie and very strong.  I enjoyed the time I spent with her when I was in Portland. 

2/19/2009 1:04:57 AM - 002037985782
Not sure if the other one took, so we'll say it again...

Jess, Jim, James, and Isabella -

Hope all went well today. 

We love you.

Meg, Murray, Mary, Emmett, and Rachael

1/29/2009 9:35:00 PM - 002024788008

Hey Jim, Jess and Isabella,

Thinking about you guys,  I keep up with Isabella's progress on this sight so keep posting!  She has such beautiful eyes!  Mike and I will be thinking about you all in the coming weeks and wish you the best of luck with the procedure!  Love you guys!

1/29/2009 8:04:56 PM - 002055655694
Jess & Jim:
   It was good to see you two last weekend at RMH.  I will email Tonya and My Schedule so we can meet upr some weeknight in Bangor....  Glad to see and hear your strength in each other and your daughter's condition....  I am sure STEP will treat her as well as it has for CAMDEN  (http://CamdenB.BlogSpot.com).

Thanks for sharing the pics and information...  talk to you both soon.

AndyB

1/12/2009 12:44:27 AM - 002052393975
Always thinking of you guys! It was nice catching up with you today for a short time.  I'll be over mid week to see Isabella!

1/9/2009 10:51:05 PM - 001032658521
Just wanted you to know that many of my canadian cousins are sending their love and keeping Isabella and both of you in their prayers.  We all pray for increased progress and to have our Isabella home soon.

Love Grammie

1/7/2009 8:51:30 PM - 002052418089
Hi Jess, it was wonderful to finally meet Isabella on Friday. What a beautiful little girl.  I enjoyed rocking and singing to her.  She is in my prayers each day.  Your Mom and I can't wait for Isabella and Aidan to have their first play date!  ; )

12/25/2008 1:26:55 AM - 002009930937

Hi guys,

I wish I had been keeping up with this site.  I didn't realize that it was so detailed.  It's great to read what's going on, but so sad as well to think that Isabella has to go through this bad stuph while she's so little.  On a positive note, she probably won't even remember it once she gets a little older.

 

Thank you so much for your emails and thank you for allowing me to see your beautiful daughter (grandaughter) and how things are progressing.

 

I'm so happy that you were able to spend Thanksgiving together.  What a blessing!

 

I will keep checking the site often now that I realize that you keep up with current events that way.

 

Merry Christmas to you all, and may 2009 be a year of peace, health and happiness!  You certainly are due!

 

Love and Kisses,

 

Caroleah

11/10/2008 3:45:55 AM - 002021594125

Jessie and Jim

She is so cute in her halloween costume!!!! What a sweet pea! I can't believe how much she looks like Jessie and Adam yet, she looks like her big brother and dad too!

See you soon

Love

Aunt Dani