Saturday, October 30, 2010

gained more...

Juliet gained even more fluid last night. She is now just an ounce shy of 12 lbs. One of the primary ways she gets fluid out is by peeing and she really didn't do that much last night. It is very important that her kidneys continue to have good function so that she can get the fluid out.

This morning, she had great output. The doctors and nurses were optimistic she was turning the corner. Her morning chest xray showed the fluid on her lungs was less. She seemed to be moving some more fluid out. Chris and I spent the morning with her but tried not to bug her too much so she could be relaxed and rest.

I just called to check on her and her output has slowed as the day progressed. Her blood pressure has also gotten low again and they had to give her a bolus of fluid to pick it back up into an acceptable range. I hate that they have to give her MORE fluid. I think they are still optimistic, but maybe not quite as much as this morning. I'm going in for another visit tonight and will update again if I'm not too exhausted.

Friday, October 29, 2010

A rough night followed by a few baby steps

Last night was not so good. Juliet was having a lot of trouble moving air through her lungs under the resistance of all of the fluid. We got a call around 2am to let us know they were going to put her on the jet ventilator to try to increase the pressure into her lungs and prevent her lungs from collapsing. About 40 minutes later, they called back to tell us she did not tolerate the jet ventilator and she was back on the standard ventilator at higher settings. Needless to say, I could not sleep after that.

She is on a few new antibiotics - since the assumption is that all of this extra fluid is being caused by an infection. Her blood cultures remain negative, however cultures from her endotracheal tube and her abdominal incision have both grown enterobacter. This is the bacteria she was growing in her blood when she was so sick at King's Daughters. In the last 24 hours, they did chest xrays, an abdominal ultrasound and a heart echocardiogram. All of which just show a lot of fluid everywhere. There was nothing on the abdominal ultrasound that would indicate a problem with her intestines. There is fluid on her lungs, around her heart and pushing up onto her diaphragm. All of this fluid makes it even harder for her heart and lungs to function. Hopefully, the antibiotics will kick in very soon and stop her capillaries from leaking all of the fluid.

Chris and I spent the day with her today. I sat and told her how strong she was and to keep fighting. I told her how many people are pulling for her. I told her about her big sisters and how much they want her to come home. I told her not to give up.

Overall today, she seems to be doing slightly better. Her blood pressure was remaining more stable and they were able to come down on her ventilatory support from last night. I haven't heard what her weight is tonight. I am hoping and praying that she has not continued to gain more fluid. Thank you for all of the messages of hope, love and prayers.

Thursday, October 28, 2010

moving in the wrong direction

Juliet continues to have more swelling. She is now over 11 lbs. This is 4 1/2 lbs in a week - of fluid. The doctors are trying everything they can think of to stop the swelling. Suprisingly, her lungs seem to be handling it pretty well. My worry is, I don't know how long her body can keep up.

Wednesday, October 27, 2010

Not feeling so good

Juliet is still having a rough time. As you can tell, she is still swollen. Look at her poor ear - that's actually smaller than it was yesterday. This extra fluid is starting to cause more problems with her lungs and heart. Also, she has to stay on the ventilator until the fluid goes down. She really doesn't feel good. It is too hard for her to open her eyes and she hates that tube down her throat. I really don't blame her. It is really hard to see her like this. She is just reminding us that SHE is in charge and everything will happen on HER schedule. I REALLY need a fast-forward button right about now. I'm ready for this roller coaster to be over.

Tuesday, October 26, 2010

Slooooowwwwwly Recovering

Juliet is taking her own sweet time recovering from her surgery. She is still on the ventilator and is still on a lot of pain medicine. She is also still VERY swollen. Her poor ears look like they are going to burst. Most of her swelling is from her chest up. The doctors are hesitant to take her off of the ventilator because she will have to breathe against so much resistance from all of the extra fluid. She gained almost 2 1/2 pounds just in fluid. It is kind of a fine balance between having her alert enough to move some fluid around, but not agitated and in pain. She doesn't really like to be messed with and is too unstable to hold. She is not eating yet - maybe by the weekend.

Today, she had her weekly eye exam and her ROP remains "stable" at a "moderate" level of severity. This basically means it hasn't gotten any worse (to "severe"), but hasn't improved either. She doesn't need dopamine any more (for her blood pressure) and should be finishing her antibiotics tomorrow. So, she is making very gradual progress to her pre-operative state. I just hope she loses some more of that fluid by Sunday - or she's NOT going to fit into her Halloween costume!

Friday, October 22, 2010

Due Date

Today is Juliet's "due date". Today she is 107 days old.

I have mixed feelings about it all. Part of me is heartbroken that she was not born much closer to this day. She has gone through SO much to get to this point. The other part of me is proud to have such an amazing daughter that has fought with every ounce (literally) of power that she has. Juliet is strong. Juliet has spirit. Juliet is beautiful.

Unfortunately today, the above qualities are slightly lacking. She is VERY swollen. And, I thought that her neck/chin couldn't get any bigger. Boy was I wrong. Her fiestiness is being kept at bay with LOTS and LOTS of medicine. It is taking a lot to keep her relaxed. She is on antibiotics, morphine, anti-anxiety meds, blood pressure meds, TPN/lipids, and a diuretic. She is on the ventilator and is filled with lines and tubes again. She has a peripheral IV, a femoral line, an arterial line, a foley catheter, a repogle drain, an endotracheal tube, 3 telemetry leads, a pulse oximeter, and a skin temperature probe. She is wearing eye shields to block out light - this helps keep her calm. It is very hard to see her like this, but I know it's only temporary. The worst is behind us. Each day forward should be better with less medicine, less ventilatory support, and less fluid retention. This is just another hurdle to get her home. She will fight like she always has. She doesn't know any other way.

Happy "Due Date" Juliet Grace.

Thursday, October 21, 2010



Surgery went very well today. They put in a femoral line, repaired her hernia, and reconnected her intestines. The remaining intestines looked great - no need to remove any more. Dr. Chahine was very pleased with the way everything looked. She was in the OR for four and a half hours. She will be on the ventilator for 4-5 days as she recovers. She will probably get very puffy again as her body adjusts to everything. However, she is a fighter and will be back to her old self in no time. Once her digestive system starts moving again (usually 4-5 days), she will get to start eating again. This time it will actually get to go all the way through!

She looked fantastic this morning before surgery - dressed to impress in her jeans and tunic. ;) (forgot my camera - sorry). She was wide awake wondering why she had not gotten to eat in 12 hours. She was trying to eat everything that came in front of her nose.

Thanks for all of the extra thoughts and prayers today! We are very lucky to have so many people pulling for our little Juliet Grace. She is one special baby.

Wednesday, October 20, 2010

Tomorrow (Thursday) is the BIG DAY!

It is still "a go" for Juliet's surgery tomorrow. She had her eyes examined yesterday and the opthomologist said they have improved and he was OK with her going to surgery. She is on the OR schedule for 11:30am. The surgery could last 4-5 hours. The current plan is to put in a Broviac catheter (a type of central line since they couldn't get a PICC line put in), perform her intestinal reanastamosis/ostomy take-down (to reconnect her intestine), and attempt to repair her hernia (while they are in there). They are going to wait until they get her to the OR to put her on the ventilator. It is going to be a LONG surgery. Chris & I plan to be there the entire day. As with her last surgery, I will attempt to update the blog as soon as possible.

(I finally remembered to bring in my camera! As you can see by the picture below, Jules was pretty bored with my photo shoot. :) )

I wanted you to see what her stomas looked like without the ostomy bag on them. After tomorrow, they will be gone!

She is telling you this will be her 4th surgery. :) (Actually, she found her thumb and was having a snack!)
She LOVES her "WUBANUB". It helps her hold in her pacifier! Thanks Linda!

Her "big girl" crib. I kept forgetting to take a picture of it.

Monday, October 18, 2010


Juliet turned 100 days old on Saturday. In honor of her milestone birthday, here are a few of our milestone "firsts" over the last 14 weeks:

2 weeks old - saw her eyes for the first time
4 weeks old - Chris & I held her for the first time
6 weeks old - breathing without the help of a ventilator
6 weeks old - heard her cry for the first time
12 weeks old - out of the isolette and into a REAL crib
12 weeks old - drank from her first bottle
14 weeks old - holds her own pacifier in :)

I'll try to get my camera in there tomorrow and get some new pictures. She's over 6 pounds now! (Her due date is this coming Friday - she will be a pretty good weight by then!)

On the surgery note, she is on the schedule for this Thursday morning. Keep your fingers crossed it's a "go". We don't need ANY more delays in this child getting home! Her infection has cleared and she is fiesty again!

Tuesday, October 12, 2010

Feeling a little better

Jules seems to be slowwwwly getting back to her old self. She was more awake today and cried louder than I have EVER heard her when her nurse was trying to empty her bag. That's good. We want her to be fiesty! It means she's actually feeling up to giving a sh*t and not just lying there feeling sick.

The current thought on the cause of this infection is her central (PICC) line. It has been in for over 2 months and the infectious disease doctor believes it probably has a clot that is growing bacteria at the end of it. The plan was to pull the line out this evening and give her IV nutrition, antibiotics, etc through peripheral IVs until her blood is clear and they can put in a new PICC line. The downside of this is central access lasts a LONG time. Peripheral access typically only lasts a few days before the vein collapses and Juliet has to "get stuck" again for another one. PICC lines minimize the number of times my poor little peanut has to be jabbed with a needle. So, hopefully she will clear this infection ASAP.

She had a nice visit with her big sisters tonight. The child life department had a "NICU SIBLINGS" group session tonight with medical play, arts/crafts, a lesson on germs & handwashing, and a doll with the same lines/tubes that Juliet has. The girls really enjoyed it and were especially happy that Jules was wide awake to greet them. Addison kept poking her chubby cheeks. Even a 4 year old can't resist those things. ;)

Surgery has tentatively been re-scheduled for late next week. This is dependent on Miss Juliet behaving herself. We aren't going to tell her the actual date - we don't want her trying to get out of it again.

Thanks for all of your well wishes the last few days. It was really discouraging to postpone surgery, as that was possibly the biggest step for her to get closer to home. I know that it will happen eventually...when the time is right. I just can't wait.

Sunday, October 10, 2010

A Step Backwards

Well, the roller coaster hasn't ended. Juliet is septic again. She is growing bacteria in her blood and is back on antibiotics. She has had a fever and is requiring more oxygen. Yesterday afternoon, her nurse noticed she was warm. They started antibiotics and drew blood cultures. The cultures have already grown positive, but the doctors are still waiting to hear exactly what she is growing. The source of the infection is still unknown, as well. They called us in the middle of the night last night to give consent for a lumbar puncture. They wanted to culture her spinal fluid. This has so far come back within normal limits. Possible culprits could be a urinary tract infection, an infection in her central (PICC) line, an aspiration of milk into her lungs, pneumonia, or a variety of other things. For now, they will just try to keep her comfortable and treat her symptoms. It could be a few days before we know exactly what caused the infection.

As a result, she will NOT be going for surgery tomorrow. This is a heartbreaker. We were all so excited to move past this next surgery. We will have to wait until she is no longer septic. They want her nice and stable before taking her to the OR. We hope the antibiotics will work FAST and she will be feeling better again very soon.

I guess we just had too many "good" days. I should know better. Three steps forward, one step back.

Wednesday, October 6, 2010

A "Brief" Briefing

This morning, I was able to feed Juliet a bottle! The nurses have been giving her bottles for about a week, but this was my first time. I was a little nervous, but she did pretty well. It's still only a teaspoon, but at least she is practicing.

Her eye exam was good yesterday. Her eyes have improved and the opthamologist gave her the OK for surgery on Monday. She is on the OR schedule for 9:45am. Tomorrow, she will go to Radiology for some contrast studies. Basically, they will put contrast medium into the section of intestine that hasn't been used for the last 8 weeks and determine how it is working. This will give the surgeon an idea of what to expect on Monday. This surgery couldn't come soon enough. Her ostomy bag is frequently leaking and causing some skin breakdown. We need to get rid of this ostomy!

You all came through with Juliet's last surgeries. Please pray and send positive thoughts that this surgery will be a success and she will no longer need an ostomy. We all want her to be a big, healthy girl and to be able to come home SOON!