Chris' tribute to Juliet

Below is the eulogy that Chris gave on Saturday. The strength that he had to stand in front of almost 300 people and speak of his love for Juliet was simply amazing. His words were perfect and pure. I am proud to have such an inspiring husband but heartbroken to see the pain in his eyes.

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Thank you all for coming to celebrate the life of my youngest daughter.

Being a father is one of the most special things a man can aspire to be. My experience is three-fold; each the same, but different. My girls have the same facial expressions, the same nose, and the signature cheeks. Were such pictures available, it might be tough to tell the difference between the three if their earliest pictures were all mixed together, and even if some pictures of Jessica from her earliest days were mixed in. I thank God for this blessing because it means I should never struggle to see Juliet – her cheeks, her eyes, her nose, her expressions…all running around in my house.

Of my girls, Juliet is the fighter. Her father is competitive in the sort of “I can beat you” mold. But Juliet is more like her mother in the “you can’t beat me” mold. I will always wonder where in life her quiet, but unyielding courage would have taken her. Even though we never took her home, I miss her already there – hearing two sets of footsteps coming scurrying by, I think it will be a long time before I don’t imagine a third. I know she would have provided great balance among her sisters – too tough to be pushed away, she would have forced her way into their tightly knit circles where she would have thrived. I like to believe she would have a wild streak. I often joked with Jess about how she would want to wear bikinis to show off all of her scars when she was old enough, confident that she could readily dispel, and by force if necessary, any reaction that did not meet her approval. She would have been one who had something to say, and maybe this is why she joined us ahead of schedule in July while we were on vacation instead of waiting until October when she was expected.

Juliet and I had a great relationship. She understood very quickly what it meant to be my daughter. I would talk and she would listen, and then not do what I asked. Early on, I told her about Spain winning the World Cup. I read her books, told her stories, and sang her songs – sometimes even Man United’s supporter songs. She would have hated City. But mostly I told her about her sisters and her mom, and how much fun she’d have when she got home. Juliet’s contributions were made almost exclusively through facial expressions and hand-squeezes, and even the occasional smile. My favorite part was simply being able to hold her gaze.

It is not my intention to tell a sad story. And while it is true that I am sad as I tell it, I am not sure that Juliet’s story is a sad one. So I ask “How is courage measured?” Is courage 1 foot 4 inches tall and weighing just over 7 pounds? There is certainly a sad story here about a brave little girl who fought like hell and did not make it home. But to leave with that would be to miss her true character.

Over the course of her remarkable life, I’ve heard many people – some very close and some whom I have hardly met – remark of Juliet’s strength and courage. This is quite a character for a 6 month old child to have built, and all the more so because she never moved beyond 2 feet of her hospital bed or for the most part uttered more than a peep.

It would be too easy to say that she simply lasted 186 days. The truth is, given her challenges, she could have only lasted 186 minutes. But that would not have been enough time to do what she came to do, to say what she came to say. Some might say how could a child that young and that fragile even know that she should fight? And perhaps that is the beauty of it – she just did. That is where we see the courage and that is what we were meant to see. That was her purpose. How wonderful that God chose to send us this message of courage in the shape of a seemingly delicate baby girl with a name of “Grace.”

It is through her inspiration that you carry and share this story. So her story is in some small part your story about courage. And that is a pretty cool impact for a baby girl to have. It makes me very proud to be her dad. My uncle had a neat way of putting it when he said that it seems like she did so much during her life that she may have died of old age.

As you know, Juliet has two sisters. Their responsibility will be more complex, a greater challenge than telling a story. Addison and Mackenzie - Juliet demonstrated courage every day. Her bravery helped her fight for 186 days against a body that seemed to fail her at every opportunity. For much of that time, she saw you – your pictures, your faces constantly positioned within her line of sight. I think she fought so hard because she desperately wanted to be a part of that love.

Your little sister built a legacy of strength, courage, and love. I ask you to carry that legacy. You must BE the story. I want you to live your lives drawing on Juliet’s strength, courage, and love as you demonstrate your own. I want you to be brave and have the confidence of growing up like Juliet would have grown up so that as she looks down she gets to live her life through the two of you. Keep your little sister close to your heart like an angel and ask her for help as you face the challenges you’ll certainly have in life. Juliet was with us in body ever so briefly, but for you and others who can continue to be inspired, her spirit can stay with us forever.

Readings from Juliet's Memorial Service

This morning I asked Juliet to send me a little of her strength and courage to get me through the day. For once, she did as I asked and got me through the memorial service and reception following. It was so touching to see the number of people that crowded in the chapel for the standing-room only service. There were at least 275 people who came to show their love for Juliet and our family. Thanks to each of you who came to give us hugs, share your words of sorrow, and show your respect to Juliet. Special thanks to Rev. Sharon, Adam, Shannan, and Shannon who spoke so beautifully about Juliet and gave the readings that meant so much. It was a beautiful ceremony for a beautiful little girl.

For those of you who were unable to make it to today's service, here are the three readings that were presented. I am trying to post the slide show and Chris' reading, as well - but that will be in a separate post.

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an adaptation from John 14 - read by Adam Pequignot (Juliet's uncle and godfather)

Let not your hearts be troubled;
believe in God,
believe also in me.
In my Father's house are many rooms;
if it were not so,
would I have told you that I go to prepare a place for you?
And when I go and prepare a place for you,
I will come again and take you to myself,
that where I am you may be also.
I will not leave you desolate;
I will come to you.

Yet a little while, and the world will see me no more,
but you will see me;
because I live, you will live also.
These things I have spoken to you,
while I am still with you.
But the Counselor, the Holy Spirit,
whom the Father will send in my name,
will teach you all things,
and bring to your remembrance all that I have said to you.
Peace I leave with you;
not as the world gives do I give to you.
Let not your hearts be troubled,
neither let them be afraid.

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A brief history of Juliet Grace by the numbers - read by Shannan Hoelle (Juliet's godmother)

25 minutes by helicopter to Norfolk from the Outer Banks

30 minutes after liftoff Juliet Grace Smith was born

1 lb 14 oz and 13 inches at birth

4 of 7 babies named “Smith” including Juliet in CHKD NICU pod D (and no, it was not done alphabetically)

100 percent of Juliet’s arm around which daddy could slide his wedding band in first days of life

2,800 miles driven collectively by mom and dad between Norfolk and Arlington

40 minutes sister Mackenzie spent crying in daddy’s car after leaving mommy in Norfolk

3 am marked daddy’s departure from Norfolk to get to Reston by 6 on Monday mornings for work

2 helicopter rides

3 intensive care units

2 very tiny titanium heart clips

5 chest tubes

3 different belly button shapes (as re-figured following each abdominal surgery)

16 Arlington Strikers who said “Run for yourself, Run for your mates, and Run for Juliet Grace”

8 attending physicians, 5 nurse practitioners, and 9 primary nurses

28 6^th graders at St. Teresa’s in Prince William County who kept her in their prayers

1,500 oz of frozen breast milk

7 freezers throughout Arlington that were used to store that milk

3 phone calls in the middle of the night

130 x-rays taken

15 different antibiotics administered

150 times her father asked “How much did she pee?”

17 times she faced the surgeon’s scalpel

31 centimeters of small intestine removed

14 times Addison sang “Daisy, Daisy” by her bedside

9 over-stuffed three-inch binders of medical records

7 lb 1 oz on her 6 month birthday

97 posts to julietgracesmith.blogspot.com

As of this morning, 51, 039 views to the blog…from 10 different countries

186 days on earth

1 special little girl

Countless people inspired by her life

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read by Shannon Wells - representing Juliet's nurses

"I’m only a small child, not much do I know.
God holds onto my hand as I look down below.
I’m here with the Father in the most beautiful place
yet I can’t feel much joy when I see your sad face.

...Your heart has been broken, I can see from up here
as you struggle along and you wipe every tear.
If I only had words I could send you today
that would tell you I’m home and I’m really okay.

Heaven is beautiful with sparkles and white wings,
and the angels are teaching me so many things.
I’ll grow and mature in this Heavenly land
while holding on tightly to my Father’s soft hand.

Then one day you’ll join me in this home in the skies.
Our joy will be full with no more goodbye’s.
So don’t grieve for me now but find peace in your soul,
and know God has finally made your little one whole.

Now, even if you can’t seem to understand why,
please know in your heart that our love didn’t die.
He tells me that just for a time we must wait
and then I can meet you at Heaven’s front gate!"

A memorial service for Juliet Grace will be held at 11:00am on Saturday, January 15, 2011. We welcome all who were inspired by her to attend. Info below:

Arlington Funeral Home
3901 N. Fairfax Dr.
Arlington, VA 22203
703-522-1441

In lieu of flowers, please consider donating to one of the following two organizations in honor of Juliet. Both of these organizations provided immeasurable support to Juliet and her family during her life.

Georgetown University Hospital Foundation
Hospital Administration – 1 Main
3800 Reservoir Rd., NW
Washington, DC 20007
(In MEMO section of check, please write: NICU Developmental equipment – in honor of Juliet Grace)

OR

Ronald McDonald House – Norfolk
404 Colley Avenue
Norfolk, VA 23507
757-627-5386
(In MEMO section of check, please write: in honor of Juliet Grace Smith)

When a child passes before a parent, it is said that a little bit of the parent passes too. I experienced this unnatural order early this morning when Juliet Grace passed away after just more than six months of the most courageous battle I’ve ever seen. Not sure whether we specifically were experiencing pain, sadness, relief, anger, or shock, it was in an environment of raw emotion from which our angel passed.

Yesterday, Juliet experienced serious internal bleeding, which required a significant amount of donor blood. This episode caused a chemical imbalance in her system from which she could not recover. Believing she had seen the worst, the doctor informed us that this episode was far beyond that from which we’d asked her to rebound earlier. Juliet was comfortable as she passed in the arms of her mom and dad, unhooked from the too many lines that had restrained and supported her. Again she demonstrated the perseverance that carried her well beyond medical expectations. And while her strength was immense, it is surely attributable to the thoughts and prayers of all of you who have followed a life whose briefness was exceeded only by the incredible impact she had on so many. A special thanks in particular to the staffs at Georgetown, Norfolk’s King’s Daughters, and Outer Banks hospitals, and Dare County (NC) Rescue in whose care she spent her whole life.

I am so very proud to be Juliet’s father, so lucky to have Jessica, Addison, and Mackenzie, and so touched for all of the support you have given my family since Juliet joined us in July. I look forward to celebrating her life and memory, and to ensuring that Juliet’s sisters carry forward her tremendous courage in their lives.

We will use this forum to share upcoming details about a memorial service and a memorial fund (in lieu of flowers, please) as they become available in the next few days.

A New Home

Juliet now resides in the PICU. She has her own room which I have already "decorated". She has her own TV which frequently is turned to the "meditation channel" that plays constant spa music. It is very relaxing - at times. Although, I think she is still getting used to the new scenery. So am I.

Change is always hard, but I am hoping this change is what Jules needs to get home. We will miss the NICU dearly, as they treated Juliet like she was their own child and got her to where she is today. Every one of the NICU employees will hold a special place in our hearts as we continue this journey.

Here is her new room. I need to send a "shout out" to the 6th graders at St. Theresa School who follow this blog and made a special angel chain for Juliet's bedside. (It's hanging on the door in the picture above.) Thank you so much for her angels and for keeping Juliet Grace in your prayers.

Today's big change was feeding. They started to feed Jules through her second stoma. This will give the lower section of her intestines a chance to work. This will also help her to finally absorb some good nutrients. For now, they are only feeding her this way - not into her stomach. They are starting this feeding even slower than before and will increase the amount/ speed as she tolerates. If it goes well they will feed her both ways to maximize absorption. The thought is if we can finally get her some good nutrition she will be better able to heal. Gaining "good" weight is one of the biggest goals right now as she hasn't really gained any actual weight since October.

What a difference a day and a few chest tubes make

Juliet was a new girl yesterday. Her size was relatively back to normal. She could fully open her eyes. Her vent settings were decreased. She was maintaining her blood pressure (with only a little medicine) and her kidneys were working again. She was MUCH happier. Apparently, she likes chest tubes.

The plan for today is a big move for Jules. She will be transferred to the PICU (pediatric ICU). The doctors (NICU and PICU) feel like it would be best for her to have a "new set of eyes" treating her. Many of her issues are no longer "NICU issues" and she seems to be in a vicious cycle without making forward progress. It is very sad for Chris and I to leave the NICU, where so many of the staff love Jules and know her so well. However, maybe this change is what we need to get her closer to home.

3 new accessories

Well...I spoke too soon. This morning I entered the NICU to find a crowd around Juliet's bedside. The surgeon was there because her incision was opening wider and her stoma was leaking into it. He was making a contraption to try to prevent that from happening. Juliet was also more edematous and more lethargic than yesterday. She could barely open only one of her eyes. She was back on high doses of her blood pressure medication since her kidneys stopped adequately functioning last night. (If her blood pressure is too low, her kidneys don't work.) They had already done a ton of labwork and had ordered an ultrasound of her abdomen and liver, a follow-up chest xray, and a cardiac ECHO. They removed her other chest tube since it wasn't in the right spot and was no longer draining fluid.

By mid-afternoon all tests were completed and all showed a large reaccumulation of fluid in her lung space - on both sides. They had to put 2 new chest tubes in to drain it. They also attached a wound vacuum to her open incision to help it to heal. This child can not catch a break.

Still behaving....for the most part

Since Friday, Juliet had a few good days of losing the fluid that she had gained last week. The last 2 nights she has gained again, but just a tiny bit (40 g). Her last remaining chest tube is barely hanging on, so hopefully it will be removed today. However, yesterday's chest xray was a little suspicious for more fluid in her lungs so it may stay. She has had a few decent days and hopefully will be able to come off of the ventilator soon. She started getting a LITTLE more milk yesterday and we got to snuggle! It made us both SO happy! According to the pictures from Friday night, she rang in the New Year in style: :)

Playing again

Jules lost a lot of fluid yesterday and is able to open her eyes again. She is SO much happier when she can see what's going on and "play" with her toys. They have been able to decrease her ventilatory support as the fluid starts to come off. We need several more days of this good behavior and she can come off the ventilator. She will be VERY happy then.

She still has in one chest tube but it is only draining fluid from the swelling. She is not accumulating the fluid in her lungs that required chest tubes in the first place. Wherever there is an exit, her body is "leaking" fluid (ie. her nose, mouth, old chest tube wounds, teeny hole in her scalp where she had a blood draw yesterday morning....) Her body is trying to get rid of the fluid anyway it can.

She is going to get some milk today. She has had a few weeks off from feedings during her latest episode of misbehavior. Again, they will start VERY slowly with the milk - 1 tsp every 8 hours.

Under the guidance of the speech therapist ( :) ), I have been using some scented chapstick on her lips to give her some "positive" input to her nose/mouth. She loves grape and strawberry. I think she likes the smell and it makes her lick her lips. With that ET tube down her throat, she needs some "nice" things associated with her mouth.

She looks good today. It was encouraging to spend time with her this morning - the last day of 2010. Let's hope 2011 brings Juliet strength, good health, good nutrition, and a trip OUT of the hospital.

Happy New Year!

Groundhog day

Unfortunately, Juliet's body is taking on extra fluid again. Her last remaining chest tube is minimally draining (which is good) but she has gained significant weight 3 of the last 4 nights. Her face and trunk are very swollen. I hope today will be a day of meetings with all of the sub-specialties (surgery, infectious disease, nephrology) to formulate a plan to quickly reverse this process. A section of her abdominal incision has become more open and the bigger she gets, the bigger that opening is going to get.

Here we go again.

Down to one...

Jules is down to one chest tube. The pleurodesis on the left side seems to have been successful. They removed her left chest tube on Christmas day. Today, they did a pleurodesis on the right side. In a few days, we will know if it was a success. If so, her final chest tube should be able to be removed.

That's the good news. The possibly-not-so-good news is she has started getting more edematous again. She gained about a pound in the last two nights. Since this is what she typically does when she has an infection, they started antibiotics yesterday. Her blood cultures have not grown anything yet.

She remains on the ventilator. An attempt to extubate her on Friday night was unsuccessful. Now that she is getting edematous again, her lungs have more resistance and require more support. We just need to get her back to her normal size and keep her that way.

After stopping in to bring Juliet her stocking on Christmas morning, we went to Pennsylvania for the weekend. It was nice to get out of town for a few days and to spend some time with our family. I didn't love the idea of leaving Juliet, but we were only 3 hours away and her medical team did a great job keeping her company. We knew she was in good hands. It was good for all of us, I think.

Hopefully, you all had a relaxing holiday weekend. Keep Juliet in your thoughts and prayers. This peanut needs to start making some major steps in the right direction very soon.

News from the NICU

After a few days of "not feeling so hot", Jules is back on the ventilator. She kept getting air trapped in her pleural (lung) space and it was making it difficult for her to breathe. Most likely the air was coming from along her chest tubes. Since the tubes have been in for over 2 months, they aren't as tight as they once were and frequently leak. If they aren't tightly sealed, air can sneak in along the track that her body forms around the chest tube. Yesterday morning, they decided to put in a 3rd chest tube to try to get the air out. This required full sedation and therefore, she needed to go back on the vent. Last night, they took out the old chest tube on the right side since the new one was draining fluid.

The doctors, as well as Chris and I, are realizing the conservative treatment with chest tubes is not working to heal her chylothorax. Most children with this issue heal on their own in 6-8 weeks. (As we all know, Juliet is NOT like "most" children.) It is time to try other options. The issue is most of those other options are surgical. While she is intubated, the team decided to try a pleurodesis. Basically, they put medicine INTO her left chest tube to create a chemical abrasion in attempt to seal the place where the fluid continues to leak. This can be very painful, so they kept her well sedated and with lots of pain meds. We won't know for 4 or 5 days if it worked. If she tolerates it without complication and it seems to be helping the chylothorax, next week they will try it on the right side. If it doesn't work, she may need another surgery to fix the issue.

It is very difficult to see her go through all of this. It is hard not to pick her up when she is upset. It is hard not to be able to dress her and snuggle with her. So many of the things we enjoy so much with babies is not happening with Juliet. I know she will be home in time and we will get to do all of those things...someday. For now, I will enjoy the time looking into her beautiful eyes, holding her hand, and singing her lullabies.

For all of you who continue to support our family during this trying time: WE THANK YOU! Juliet has a Christmas tree, a stocking and many presents next to her bed thanks to great friends. For the past week, we have received special treats on our doorstep EVERY day. All of these things put smiles on our faces and remind us how many people we have that love us and love Juliet.

Merry Christmas to you all!

From earlier in the week

A Little Daddy-time

Chris was finally able to hold Juliet on Friday night. He has not held her since October and boy was he happy to finally be able to get in some snuggling. Jules looked like she enjoyed it, too.

She has had a few good days - but don't tell her that. She has started getting breastmilk again - although the doctors/nurses are making it "skim" to help prevent exacerbation of her chylothorax. In the next day or two, she will have a contrast study to look at the second section of her intestine. If it looks good, they will start feeding her through her other stoma (in addition to her stomach) so that ALL of her intestine will be digesting milk. This is in hopes of decreasing her TPN (IV nutrition) and improving the condition of her liver.

We are still dealing with the chest tube issue - as both chest tubes continue to drain a significant amount of fluid on a daily basis. Most doctors say this takes a LONG time to heal itself - hopefully soon they can be removed so she can be more active.

Let's hope Jules has another good week and continues in this direction with minimal hurdles. That would be the best Christmas present we could ask for.

** To "Santa's Elves" that just left a giant box on our doorstep - we thank you from the bottom of our hearts. Now, if we could just figure out who you are!

She's.....

off the vent! Yesterday afternoon, Jules was extubated. She has been doing pretty well with her breathing since then. She is looking like herself again. Her chest tubes are still draining fluid - but it has slowed down a little bit. She has had a few other issues (minor ones in Juliet terms) - her kidney function has been up and down, she's been having some bleeding from her incision, her electrolytes have been back and forth, her pain meds need constant adjustment etc. etc. But it wouldn't be Juliet if she didn't have something to keep everyone busy.

I just got back from a brief visit with her. She was wide awake, so we sat her up for a little exercise. She did much better this time! Chris is visiting her now - I think he is going to hold her. He hasn't held her since October 21st - the morning of her surgery!! He will be on Cloud 9 when he gets home.

I realized I never posted the picture of Juliet actually wearing her Halloween costume. On Halloween night, she was too sick to wear it, so the nurses just layed it on top of her. A few weeks later, when she felt a little better, they actually put her in it. Enjoy!

Sitting?? She's Not So Sure

Yesterday, I tried to sit Juliet up for a little while. She liked it for about....5 minutes before she started trying to cough/gag out her breathing tube. Hopefully, she will get rid of that in the next few days. The physical therapist in me is going crazy with her spending the last 7+ weeks basically on her back. I can't wait to be able to really exercise this child.

She has had a few pretty good days and has gradually been returning to her spunky self. She loves attention and is happy when people stop by to talk and sing to her. We also seem to have several little elves running around the NICU. Little gifts keep appearing at her bedside. I have found 2 Christmas MOOSE, cute little socks, and adorable shiny silver shoes. Jules definitely gets a lot of love. All she has to do is look up at you with those big eyes and you are hooked.

Feeling better again

Juliet is definitely looking and feeling better since her surgery on Tuesday night. She has not accumulated the fluid that we expected and has remained on fairly low vent settings. She returned to the OR today for a new central line. Dr. Chahine put a double-lumen Broviac catheter in the same spot where her femoral line was. He did not want to do it on Tuesday night, since there was so much infection. Her blood cultures remained negative, so he took her back down for surgery this afternoon. It only took about an hour and everything went fine. Hopefully, she will come off of the ventilator in the next 2-3 days.

Her nurse last night took a few pictures to celebrate her 5 month birthday! Thanks for your continued thoughts and prayers for our little warrior.

Surgical Report

Juliet was in surgery for 4 1/2 hours last night. Shortly after 11:00pm, she returned to the NICU with her surgeon, Dr. Chahine. He explained when he opened her abdomen, it was filled with infection and bile. A portion of her intestine had several tiny tears and needed to be removed. He removed about 14 cm. of her small intestine (fairly close to her stomach). As a result, she has 2 stomas again. One that will go into an ostomy bag and one that he hopes to be able to feed her through. This way her entire remaining intestine can be fed and absorb nutrition, in hopes of preventing further liver damage. Her liver was enlarged and discolored, but still soft. Apparently, this means the damage is still reversible. However, the longer Juliet remains on her IV nutrition (TPN/lipids), the more damage her liver will sustain and the higher potential for permanent liver injury. If she can tolerate more feedings through the majority of her intestine, the TPN can be decreased.

Dr. Chahine's best possible explanation for all of this is that the intestine that was stuck in a hernia at her last surgery was the section that had perforated. They repaired the hernia the last time, but it had probably been damaged a little during the process. He suspects this happened fairly quickly after her last surgery (when she was the sickest) and Juliet has been managing the perforation and infection the last 6 weeks. He also suspects the infection was contributing to her chylothorax (excess fluid that is draining in her chest tubes) as it had spread up into her chest cavity as well.

The entire team is hopeful that this is what has been making Juliet sick over the past 6 weeks and now that it is repaired, she will start to improve. So, she has signed herself up for at least one more surgery to reconnect her intestines and take-down the ostomies. When this will happen will depend on her recovery from last night's procedure. Again, like her other surgeries, she is expected to get sicker over the next few days and then start to improve. Last night, she was relatively stable. Today's goals are to keep her comfortable and to closely watch her fluids. So, our little Juliet keeps on fighting. This child not only has the will to live, but the will to make an impact. She is one special baby.

Thanks to all who took care of her last night, through the surgery and beyond. We are eternally grateful. And I almost forgot, HAPPY 5 MONTH BIRTHDAY, JULIET!! XOXO

quick update - start the prayers

a real quick update - Juliet is in surgery right now. She wasn't acting herself today and an abdominal ultrasound revealed a large abscess under her liver. This is a different one than the one they saw last week. They are going to go in and explore her intestines to see what could be causing the abscess - and clean everything up. I will update tomorrow, but wanted to post so that the thoughts and prayers would start coming in to get her through surgery.

The good news and the not-so-good news

First, the good news: I held Juliet today!! Thanks Jess! (one of Jules' primary nurses who was up for the challenge of moving ALL of her attachments)


I loved snuggling with her, even though she didn't really feel so good. That leads me to the not-so-good news. A mid-afternoon chest xray revealed a large amount of air on her lungs. After repositioning her chest tube, she seemed to feel a little better...but not for long. She had a few episodes of dropping her heart rate and oxygen saturation levels. Her doctor wanted to do a more involved adjustment of one of her chest tubes. This required a lot of pain meds and sedation. Since, Jules' was already having a little difficulty today, they decided to put her BACK on the ventilator to adjust the chest tube. The plan is to leave her on the vent through tomorrow and then hopefully take her off again. She definitely wasn't very perky today.

A few new things

After some discussions, it was decided not to do a CT scan of Juliet. The type of CT scan Juliet needs (with contrast) could not be done due to the decreased functioning of her kidneys right now. Instead, they did an abdominal ultrasound to explore her gut a little bit. This showed a small abscess (pocket of infection) under her abdominal wall, but not inside of her intestines. It seems small enough to be treated with antibiotics, but if that doesn't work, they can use a needle to aspirate it (using ultrasound to guide them).

The abscess doesn't explain the green vomit. One possible explanation for that is her Lovenox (blood thinner). They monitor her blood levels to follow that medicine and the level was slightly higher than it should be. They stopped giving it to her for a few days, will recheck the level tomorrow morning and based on that may restart the Lovenox. She hasn't vomited in a day and a half. We aren't positive, that was why she was doing it, but right now, it's the best explanation. That seems to be the case with a lot of Juliet's issues. She really is doing her best to challenge ALL of her doctors.

Respiratory-wise, she is doing pretty good. She is still on the high-flow cannula in her nose and she seems to be settling in. Yesterday morning, her breathing was fast and labored. But, after a dose of diuretic, it improved. Juliet is SO sensitive to fluid - the littlest changes can have big effects. Her weight remains good. Her kidney functioning remains fair. She is off her blood pressure medicine. Her attitude remains fiesty. :)

Why can't she be boring?

Juliet continues true to her personality and is making me crazy. First the good news, she came off of the ventilator today and has been doing well with breathing on her own. Her weight is down to her "actual" weight.

Now in typical Juliet fashion, she has begun something new. Since last night, she has been vomiting nasty green stuff. At first, they were worried her intestines may have perforated again. However, on further review of several xrays, it was determined that is probably not the case. Could it be an intestinal obstruction? Maybe. Could it be something else? Possibly. They took several more xrays this evening and are considering taking her down for a CT scan. This is much easier now that she is off of the vent and they have been wanting one anyway to look at the clots. This would give them a much better BIG picture of her condition. They were considering starting to feed her again today, but not after this newest development. This child really needs a good lecture about her behavior.

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.

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.

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.

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.

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.

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!

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.

A GREAT DAY!

NO MORE OSTOMY!!! NO MORE LEAKY BAGS!!

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.

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.

100 DAYS OLD!

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!

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.

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.

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!

Making Progress

The issues that Juliet was having over the weekend have seemed to improve. She is now tolerating her feedings. And, actually isn't requiring the SLOOOWWWW feedings over the pump anymore. Today she even got to try a BOTTLE for the first time. She still needs a lot of practice with the whole breathing while eating thing, but she'll get it. As you can see from the picture below she is now in an open crib! No more isolette! She had been getting too hot in her isolette - particularly when she was swaddled. She looks like such a big girl in her crib. As you also may have noticed, she sleeps A LOT! This needs to improve if she is going to successfully take a bottle and/or nurse. Maybe being out in the open crib where it's a little noisier and not quite so cozy will help.

They went down on her oxygen today, as well. She is going to be in great shape going in to her surgery. The downside of that is: it's going to be VERY hard to see her back on the ventilator again and not feeling good after her surgery. We'll just hope for a quick recovery and that she will be back to looking this cute soon! Her eye exam was...OK. The doctor said it "didn't look worse" than last week. But the jury is still out if it is "stable". They will examine her again next Tuesday and be sure that it is actually stable before sending her to surgery. The stress of surgery/anesthesia could further damage her eyes if they aren't stable.
Today, on her 12 week birthday, she weighs 2460 g - that is FIVE lbs 6 oz!! She's come a LONG way! Although, I think at least 3 of those pounds are in her cheeks and double chin. :)

What's going on in bed spot 18?

Jules has had a few minor ups and downs over the last couple of days. On the down side, her heart rate and respiratory rate have been elevated. The team is still trying to figure out why. Also, she wasn't tolerating her feedings of milk - wasn't really digesting them. They made several changes to the way they are feeding her since Friday and so far today, she seems to be doing better. On the up side, I spent a LOT of time doing kangaroo care. It really settles her down. Her heart rate and respiratory rate always go down when we are snuggling. Then I have to put her back in her isolette and she gets SO mad! She also keeps gaining weight. As of today, she is 4 lbs 14 ounces! Almost to the 5 pound mark! Here are a few recent cell phone pictures. I need to stop being so lazy and bring my "good" camera in for another photo shoot.

One of Juliet's nurses bought this dress for her! It's courderoy! She has MORE clothes than any baby in the NICU right now. (They like to keep her left arm out of the sleeve to keep an eye on her PICC line.)

Last night, I got to help give her a bath! She needed a complete overhaul. I washed the top half - which included lifting up her giant neck/chin and discovering some lost treasure hiding underneath! ;) Seriously, all of her fat is migrating under her chin! The cheeks she gets honestly. Here is a picture of her face TUBE FREE!! As part of her overhaul, we changed her tape and I had to sneak in a picture before we re-taped her tubes.

After her bath, we dressed her in her leopard print onesie! As you can see, the bath wiped her out!

Tomorrow is her eye exam. Keep your fingers crossed that her ROP has not progressed.

Puttin' on the Ounces!

Juliet has spent the last week getting bigger! She is now 2030 grams - that's 4 pounds and 7 ounces! She really looks like a miniature Addison & Mackenzie now. She's been doing great with practicing to nurse. She's not allowed to actually get anything, but she's been able to practice and as long as she's awake, she does great. She had a very successful speech therapy session yesterday to start helping her coordinate her sucking and breathing. Her breathing is still a little fast and labored at times. However, she continues to tolerate relatively low levels of oxygen. She is now on 2 liters of oxygen at 21%. (21% is equal to what we breathe in room air.)

Jules had her third eye exam yesterday. It showed a slight worsening of her ROP (retinopathy of prematurity). This is an abnormal formation of the blood vessels in your eye and is a complication with babies born prematurely. It can cause vision deficits if not followed closely and treated, if necessary. Juliet will now get weekly eye exams to monitor her ROP.

The biggest news is her next surgery is now on the calendar. On October 11th, she will return to the OR for take down of her ostomy. They will reconnect her intestines and she will no longer have an ostomy. While they are in there, they will inspect the rest of her intestines and make sure there are no more problem areas that need to be removed. In preparation for this surgery, they will do contrast studies to determine how things are moving through her intestines and get a better idea of what to look for in surgery. She will need to go back on the ventilator for the surgery. This is another major procedure. But, Juliet has spent the last 2 months simply growing and getting stronger so she should be well prepared. This is just the next step to getting her home. And for that, we can not wait.

Growing Big & Strong

Juliet continues to do well. She is requiring less oxygen and is tolerating her feeds. She continues to gain weight and doesn't need much help maintaining her temperature. She has started receiving occupational therapy (from my favorite OT! :)) and will begin speech therapy for her oral-motor skills later this week. It is so wonderful to have such great friends taking care of Jules. I know she is in good hands and is getting lots of love even when Chris or I can't be there.

Smith Party of Five

She doesn't always enjoy her bath!

Seriously...can she really be TWO months old?

Juliet has been a part of our family for only two months now and I can't even imagine a life without her. As of today, Jules weighs 3 lbs 10 oz! She continues to grow and get stronger in preparation for her next surgery - which is probably about 3 weeks away. She has SO much personality already. (It's a little bit scary, actually. I'm really worried about when I have 3 wild teenage daughters under my roof.) She has gone up a little bit on her feedings. She is now getting 7 cc of milk every 3 hours. However, she is now getting it VERRRRY SLOWLY over 90 minutes! This is to prevent reflux and to try to keep it in her very short digestive tract for a little longer. Everyone continues to feel optimistic about her progress and prognosis. Below are a few pictures of her recent NICU adventures.

She looks so grown up when she wears clothes.

A bald spot (from an IV) and a bear on her bottom!

"WHY do you make me wear such silly hats?"

8 Weeks Old!

Juliet turned EIGHT weeks old yesterday! I really can't believe it. Looking back, it has actually gone by fast - especially now that I am home, back to work, and VERY busy! Jules looked SO big to me today. She is actually starting to fill out a little bit and get "some meat on those bones". :)

We are still several weeks away from her next surgery. Until then, the team will just continue to wean her oxygen requirements and increase her feedings. She was up to 5 cc (1 tsp) of milk every 3 hours, but had to go back down to 4 cc every 3 hours because she wasn't tolerating it. Because her ostomy is fairly close to her stomach, the food doesn't have that much time to digest before exiting into the bag. Increasing her feeds could be a very slow process - especially until her intestines are reconnected. She will continue to get her nutrition intravenously from TPN & lipids. The downside of this is that higher amounts and longer durations of TPN/lipids can be very toxic to the liver and can cause permanent liver damage. If Jules can tolerate more breastmilk, they can go down on her IV nutrition. This is the goal.

She had another normal head ultrasound on Thursday and is due for another eye exam this weekend. She also may start getting Occupational Therapy next week. This will supplement the Physical Therapy she has been getting since birth. :)

From right to left, these are her "accessories" you can see in the picture: nasal cannula giving her oxygen in her nose, orogastric (OG) tube from her mouth to her stomach to give her milk, IV on her right arm, PICC line (central IV) on her left arm, telemetry lead (black wire is 1 of 3) that measures her heart rate and respiratory rate, skin temperature probe (tiny white wire coming off of her right side), ostomy bag, wound dressing, diaper, ID band on left ankle, and pulse oximeter (glowing red) on left foot measuring the oxygen level in her blood. She is going to be SO happy when she is not attached to all of this stuff!