Progress

Juliet continues to make progress in the right direction. The edema is almost gone. Her blood cultures remain negative and she should be ready to come off of the ventilator very soon. Let's hope her 4th extubation will be her last.

She had an eye exam this afternoon. The opthamologist was VERY pleased with her eyes. He said "she's out of the woods" and doesn't need to see her for 6 months! This is great news.

The next few hurdles are: get off the ventilator, start eating, and stop draining from the chest tubes. These are BIG hurdles and could take some time. I'll keep you posted on her progress.

Feeling a little better?

The extra fluid/swelling is starting to come off. Juliet has lost about a pound and a half over the last 2 nights. She is able to open her eyes again and is becoming more active. Actually, I haven't seen her eyes yet, but Chris did last night. He said to her "Juliet, why don't you open up your eyes for Daddy?" And she DID! Maybe she is more obedient than we thought! ;)

Just like the last time she gained all of the extra fluid, they will wait until it's almost all gone before taking her off of the ventilator. We have to wait until the chest tubes are no longer draining such large amounts before she can start to eat again. We have to wait until her feeding is established before taking her off of her IV nutrition. We have to wait until she doesn't need IV meds before removing her central line and taking her off of blood thinner. That's a lot of waiting. She's worth it.

I Am Thankful...

For the doctors and nurses who are taking care of Juliet today and everyday.
For all of you who continue to keep her in your thoughts and prayers.
For my family & friends who stand by to hold me up when I can't do it alone.
For Chris, Addison, & Mackenzie who make me smile every single minute.
For Juliet, who has shown me the meaning of strength.
Happy Thanksgiving to you and those who make you smile.

Juliet is relatively stable. She remains on the vent, with both chest tubes continuing to drain. Sunday and Monday nights she gained almost 400g each night. Tuesday night she gained 200g. And last night, she gained 100g. It seems the fluid is slowing - both in her weight and in her chest tube output. Hopefully, this latest episode of sepsis is winding down with the antibiotics and we will start to see some changes in the right direction very soon. After a few more blood tests, the team will start her on some medicine for her blood clots. This won't really help to make the exisiting (very old) clots smaller, but it will prevent them from getting any bigger and causing even more issues.

Back on the vent

In the middle of the night, they re-intubated Juliet. She was having trouble breathing and her labs were troubling. They put her back on the ventilator around 1am. Again last night, her weight showed a big increase - even a little more than the night before. When she started misbehaving on Sunday, they did a septic work-up to see if she had another infection. Her blood culture grew bacteria last night, which means she is septic again. Her ultrasound last night showed a clot in one of the large vessels to her heart (her IVC). All of the above make for a not-very-pretty picture. I assume today will be another day of lots of specialists and lots of changes. Lets hope they are all in the right direction.

Misbehaving

Juliet gained almost a pound last night. Her face, neck, and chest were visibly more edematous today and she was having some difficulty breathing. Her chest x-ray showed more fluid on her lungs and her chest tubes continue to drain fluid. Her kidneys also decided to stop working again. I was very discouraged as I walked in to find such a different picture today. After a few med changes, in hopes to spark her kidneys and increase her blood pressure, she looked a little more comfortable by the end of the afternoon. An ultrasound of her chest, neck, and upper extremities was ordered to look for a clot that could be contributing to her fluid issues. (The echocardiogram a few days ago didn't specifically show a clot, but based on the blood flow, one was suspected.) Chris is visiting her now - hopefully he will bring home a more positive update.

A Holding Pattern

Juliet has been in a little bit of a holding pattern. She continues to drain a significant amount of fluid from her chest tubes. Her electrolytes keep getting wacky. The only nutrition she is getting is TPN. She seems to be dehydrated. No major changes have really occurred in the past few days. They have just been giving her some extra fluid and managing her electrolytes to make up for the fluid she is losing. We are all hoping the chest tube output starts slowing down soon so they can be removed.

She is happy to be off of the ventilator and has spent most of the last two days (and nights!) awake and active. Today, she finally got some good sleep. She really didn't want to miss anything. The highlight of the weekend was I got to hold her yesterday!! Not a good snuggle hold, just on a pillow on my lap. But I'll take it!

Look At Me!

Juliet is OFF of the ventilator!! She was extubated yesterday morning, but the team was threatening to put her back on, so I didn't post. (I didn't want to jinx it.) :) She had a good night last night and an even better day today so I think it's safe to share. Her electrolytes are still a little off and she is dehydrated because of the fluid restriction she has been on the last week and a half. The changes over the last 24 hours have mostly been to address that. They are now giving her extra fluid to make up for the fluid that continues to drain from her chest tube. When will her chest tubes stop draining? Only time will tell. Time.....it's one of my least favorite things right now.

Juliet continues to be such a little fighter. I have a feeling, throughout her life, she will accomplish ANYTHING she puts her mind to.

quick update

So sorry to have gone so long between updates.... :)

Juliet's weight last night was 6 lbs 10 oz. She can probably stop losing weight now. She looks like herself again. She is frequently alert and sometimes playful - until she gets angry about the breathing tube down her throat, chest tubes, etc.

Events over the last 3 days - Jules pulled out one of her chest tubes on Saturday night. The team tried unsuccessfully to reinsert it right then and then decided to leave it out. By Monday morning, the fluid was starting to collect (a little) in her lungs, so they put the chest tube back in. Both chest tubes are now draining fatty fluid from her lymphatic system. The "fat" is coming from the breastmilk that she has been getting since Sunday. It is a little confusing - even for me- how this works, but as a result, she now is eating a special formula that will bypass her lymphatic system. Hopefully, this will stop the new leaking of fluid into her lung space. They are still trying to rule out a blood clot in her superior vena cava (a main vessel of her heart) that could also be contributing to fluid build up. Because of the all of the above, she is still on the ventilator. She will have another echocardiogram to check her heart and for the clot.

So, even though it is great to see Jules looking so good on the outside, she still has a long road to go to get her "inside" caught up.

Oh yeah - other good news - her intestines are definitely working. I changed my first stinky diaper on her on Saturday (only took 4 1/2 months :0 ) and she keeps filling them up with pride!

Anyone want to play?

Can you even find Juliet in all of that equipment??

Below is what Juliet looked like on Monday. It's really hard to look at, but I wanted you to see what an amazing transformation took place over the last five days. It doesn't even look like the same baby.

Making up for lost time

Jules was awake basically the entire day yesterday. She wanted to interact with everyone that walked by. Her nurse hung a toy down from the top of her bed so she had something else to look at. She spent all day moving her arms trying to get the toy. She even had a few books read to her. No one could resist stopping to talk and play as they walked by. Everyone is just so happy to see her feeling better. After three weeks of not being able to see anything or even move, Juliet was taking advantage of every minute.

Her weight last night was down to 7 lbs 8 oz. It is so good to see her looking like her actual size again.

weight check

Tonight's weight = 8lb 9 oz. She has lost 4 lbs since Tuesday morning. She only has about 2 lb to get back to her "dry" weight of 6 1/2 lbs. Juliet is continuing to get fluid off and in turn making it much easier to breathe and function. The chest tubes will stay in until they are no longer draining fluid. She will remain on the ventilator until she is back to her "dry" weight. Keep it up, Jules. You're getting there!

Making a statement

Today, Juliet opened her eyes for the first time in almost THREE weeks. She was awake and alert and looking at the people talking to her. At one point, she even cracked half of a smile. Juliet is not ready to give up. I think she was telling us that she is still in there and wants to stick around.

Her weight last night was down 700 g - that's 1 1/2 pounds - from the day before. She basically has been shrinking before our eyes. Her nose is finally the tallest point of her face again and not buried under all of the swelling. Her chest tubes continued to get more fluid out today and her kidneys continued to do their job. This morning, she had an echocardiogram to check her heart function. The report showed a significant improvement from Monday morning. Her vent continues to be weaned and her blood pressure was not an issue. What we need now is several good days moving in this direction, making progress towards getting off of the ventilator.

Oh, I almost forgot. They started feeding her today. She is getting a tiny bit of Pedialyte continously dripped into her stomach from her nasogastric (NG) tube. Another step in the right direction. What a difference 48 hours (and 2 chest tubes) make.

She's not giving up yet

Juliet continues to fight in a way that is unbelievable to me. She had an extremely rough night last night, with frequent episodes of dropping her heart rate and oxygen levels. This meant her heart and lungs were really suffering. Her morning chest xray showed very large collections of fluid around her lungs. This fluid was basically squeezing her heart and lungs so much that they were unable to adequately circulate blood to the rest of her body. As a result, her kidneys stopped working. The only option at this point was to put in two chest tubes to drain the fluid from around her lungs. By 4:00 this afternoon, those tubes had drained almost a pound and a half of fluid and Jules was looking much perkier. Her kidneys began to slowly start working again as well.

We had a long talk with her medical team about prognosis and the "big picture". Her doctor admits he is much less optimistic now than last week about her being able to recover. However, he also says it is too soon to stop fighting. He thinks there is still a chance she could pull through and agreed to tell us if that changes. Chris and I don't want Juliet to suffer or for any of the interventions they are using to cause more harm than good. Our feelings were heard and we are happy to be working with a medical team that we trust.

So Juliet keeps fighting. She inspires me everyday in her determination and spirit.

I'm not even really sure how to say it other than Juliet, once again, is fighting for her life. Over the last 48 hours, her kidneys have significantly slowed in output, her weight is climbing again, the fluid around her lungs has significantly increased, and her heart is starting to pay the price for all of the above. The optimism in her prognosis is swiftly changing.

Again today, we met with nephrology, GI, infectious disease, and neonatology teams - trying to reformulate a plan. They are trying some new medicines and new techniques in hopes of turning this around. Another day was spent by Chris and I holding Juliet's hand and telling her how many people love her and want to see her pull through - including her big sisters. The emotional roller coaster of the last few weeks is really taking its toll. But thank goodness, we have Addison and Mackenzie to bring a little joy to our days with their never-ending dance parties and giggles.

I'm asking all of you to keep our family and especially Juliet in your thoughts and prayers. At this point we are taking things one day at a time - even one hour at a time. As her doctor said this morning, "Juliet rallied once before and now she needs to do it again."

Still slowly shrinking

Juliet is getting weighed daily again. She has lost over 2 lbs so far and has about 4 more to lose. (She gained over 2 liters of fluid on her 6 lb body.) Each day she seems to be feeling a little better and needing a little less sedation. She is still requiring support from the ventilator to keep her lungs expanded. Although, this seems to improve each day as well. We haven't seen her eyes in 2 weeks since her face has been so swollen. Maybe in the next few days she will be able to open them. She is also still too unstable to hold. I can't wait to be able to snuggle with her again. I took a few pictures with my phone on Tuesday just so I have some evidence of how big she actually was. They are very sad to look at, so I won't put them on the blog. I'm just keeping all of this drama documented so one day I can show her what she put us through! She better be a perfect angel of a teenager!

slow and steady

If nothing else, Jules seemed to be a little more comfortable today. They stopped using the paralytic and she seemed relatively calm all day. She only need a few extra doses of pain meds (as opposed to an extra dose every hour like she did at one point last night). Her output decreased a litle bit, so they gave her a blood transfusion to try to "perk up" her kidneys - among other things. They also tweaked a few of her other meds to try to get her back on track with losing fluid. Her ventilatory support was weaned a little more today, as she is breathing more easily without so much extra fluid. Her face is becoming more defined and you can actually see her nose again instead of it being buried beneath swollen eyes, lips, and forehead. Keep it up, Juliet! You can get over this hurdle!

Getting a little fluid out

Juliet has had a pretty good 48 hours. Her output is FINALLY more than her intake. She is visibly less swollen - especially in her face. They haven't weighed her since Sunday night. (She is very sensitive to all touch, so they are trying to minimize how much they do to her.) However, she should be starting to lose some weight based on the above.

Her ventilatory support was decreased a few times this afternoon. Hopefully, with some of the fluid coming off, it is easier for her to breathe. They started giving her a paralytic to keep her from moving. They want her movements to be minimal for a few reasons right now. First, her ET tube can not come out - it would be very difficult to try to get it back in if it did. Second, she has an arterial line in her foot that is very positional and is crucial in getting blood samples and a constant blood pressure. Her surgeon spent 3 hours on Monday night trying to get that line in her and they do NOT want to lose it. She is running out of spots for IV/line access. Also, the thought is if she just rests and stops trying so hard to be active, her body will get some good healing time.

We definitely are not out of the woods yet, but at least we are heading in the right direction. We need a good full week of losing fluid and progress to get us closer to where we need to be with her stability. Thanks again for all of the thoughts, prayers, and offers to help. Chris likes to say, "Juliet will repay everyone in hugs when she gets better!"

The past 36 hours...

Yesterday was an emotional day. We met with several specialists to try to optimize Juliet's medical treatment. The NICU team consulted with the GI , nephrology, and infectious disease teams. Each of those teams had a few ideas of how to best change her medicines, fluids, etc to try and stop the persistent swelling. The NICU team was open to their suggestions and made SEVERAL changes to her treatment plan.


Chris & I then had a meeting with the neonatologist and the social worker. They explained the critical turn that Juliet has taken over the past week. They expressed concern that she may not be able to pull through this - but they also can't say that she won't. It was presented that if these latest changes to her treatment do not work, we may not have any other options to make her better. It was very hard to talk about the seriousness of her current state. We have definitely been thinking it was this bad, but to hear it was extremely difficult. So we left the meeting hanging on to hope that the new medicines would be what she needs to turn the corner.


By yesterday evening, Juliet's urine output was starting to improve. By the end of night shift last night, she had peed more than she had in the previous 2 days combined. Some of her morning blood levels, led the team to believe she was starting to actually hold onto some of the fluid in her blood instead of just leaking it all out into her cell walls. (It's a lot of very scientific stuff that is a little complicated to explain on the blog.) Yesterday, was the first day in a week that she actually had more output than intake. They did not weigh her last night, but she should not have gained too much if that was the case.


Today continued with more peeing. I have said many times today "I never thought I would ever be SO excited about PEE!" :) Her output wasn't quite as high as it was last night, but it is still A LOT higher than the previous days. Her heart rate and blood pressure have been good today - they even weaned some of her blood pressure medicine. She is also on several new pain meds and sedatives. They are trying to wean her off of Morphine and onto Methadone over the next day or so.


We are all feeling slightly more optimistic than we were yesterday. However, we agree it is still too soon to jump for joy. A few more days of consistent output and vital sign stability and we will breathe a little easier. Keep the prayers and positive thoughts coming! Juliet can feel your love!

Still waiting for progress

Juliet continues to gain fluid. Her body has not yet turned the corner like they had hoped. Her blood pressure and heart rate continue to be an issue. Today, I want to have a conversation about all possibilities. I want to make sure we aren't missing anything that could be causing this to happen. It is just too hard to sit and wait and hope that things get better.