Wednesday, January 19, 2011
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.
Saturday, January 15, 2011
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.
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.
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 6th 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
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!"
Tuesday, January 11, 2011
Arlington Funeral Home
3901 N. Fairfax Dr.
Arlington, VA 22203
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)
Ronald McDonald House – Norfolk
404 Colley Avenue
Norfolk, VA 23507
(In MEMO section of check, please write: in honor of Juliet Grace Smith)
Sunday, January 9, 2011
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.
Thursday, January 6, 2011
Wednesday, January 5, 2011
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.
Monday, January 3, 2011
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.
Sunday, January 2, 2011
Friday, December 31, 2010
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!
Wednesday, December 29, 2010
Here we go again.
Monday, December 27, 2010
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.
Friday, December 24, 2010
From earlier in the week
Sunday, December 19, 2010
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.
Thursday, December 16, 2010
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!
Monday, December 13, 2010
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.
Friday, December 10, 2010
Wednesday, December 8, 2010
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
Tuesday, December 7, 2010
Sunday, December 5, 2010
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.
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. :)
Thursday, December 2, 2010
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.
Tuesday, November 30, 2010
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.
Saturday, November 27, 2010
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.
Thursday, November 25, 2010
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.
Tuesday, November 23, 2010
Monday, November 22, 2010
Sunday, November 21, 2010
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!
Thursday, November 18, 2010
Wednesday, November 17, 2010
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!
Saturday, November 13, 2010
Thursday, November 11, 2010
Wednesday, November 10, 2010
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.
Tuesday, November 9, 2010
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.
Monday, November 8, 2010
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."
Saturday, November 6, 2010
Thursday, November 4, 2010
Wednesday, November 3, 2010
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!"
Tuesday, November 2, 2010
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!
Monday, November 1, 2010
Saturday, October 30, 2010
This morning, she had great output. The doctors and nurses were optimistic she was turning the corner. Her morning chest xray showed the fluid on her lungs was less. She seemed to be moving some more fluid out. Chris and I spent the morning with her but tried not to bug her too much so she could be relaxed and rest.
I just called to check on her and her output has slowed as the day progressed. Her blood pressure has also gotten low again and they had to give her a bolus of fluid to pick it back up into an acceptable range. I hate that they have to give her MORE fluid. I think they are still optimistic, but maybe not quite as much as this morning. I'm going in for another visit tonight and will update again if I'm not too exhausted.
Friday, October 29, 2010
She is on a few new antibiotics - since the assumption is that all of this extra fluid is being caused by an infection. Her blood cultures remain negative, however cultures from her endotracheal tube and her abdominal incision have both grown enterobacter. This is the bacteria she was growing in her blood when she was so sick at King's Daughters. In the last 24 hours, they did chest xrays, an abdominal ultrasound and a heart echocardiogram. All of which just show a lot of fluid everywhere. There was nothing on the abdominal ultrasound that would indicate a problem with her intestines. There is fluid on her lungs, around her heart and pushing up onto her diaphragm. All of this fluid makes it even harder for her heart and lungs to function. Hopefully, the antibiotics will kick in very soon and stop her capillaries from leaking all of the fluid.
Chris and I spent the day with her today. I sat and told her how strong she was and to keep fighting. I told her how many people are pulling for her. I told her about her big sisters and how much they want her to come home. I told her not to give up.
Overall today, she seems to be doing slightly better. Her blood pressure was remaining more stable and they were able to come down on her ventilatory support from last night. I haven't heard what her weight is tonight. I am hoping and praying that she has not continued to gain more fluid. Thank you for all of the messages of hope, love and prayers.
Thursday, October 28, 2010
Wednesday, October 27, 2010
Tuesday, October 26, 2010
Today, she had her weekly eye exam and her ROP remains "stable" at a "moderate" level of severity. This basically means it hasn't gotten any worse (to "severe"), but hasn't improved either. She doesn't need dopamine any more (for her blood pressure) and should be finishing her antibiotics tomorrow. So, she is making very gradual progress to her pre-operative state. I just hope she loses some more of that fluid by Sunday - or she's NOT going to fit into her Halloween costume!
Friday, October 22, 2010
I have mixed feelings about it all. Part of me is heartbroken that she was not born much closer to this day. She has gone through SO much to get to this point. The other part of me is proud to have such an amazing daughter that has fought with every ounce (literally) of power that she has. Juliet is strong. Juliet has spirit. Juliet is beautiful.
Unfortunately today, the above qualities are slightly lacking. She is VERY swollen. And, I thought that her neck/chin couldn't get any bigger. Boy was I wrong. Her fiestiness is being kept at bay with LOTS and LOTS of medicine. It is taking a lot to keep her relaxed. She is on antibiotics, morphine, anti-anxiety meds, blood pressure meds, TPN/lipids, and a diuretic. She is on the ventilator and is filled with lines and tubes again. She has a peripheral IV, a femoral line, an arterial line, a foley catheter, a repogle drain, an endotracheal tube, 3 telemetry leads, a pulse oximeter, and a skin temperature probe. She is wearing eye shields to block out light - this helps keep her calm. It is very hard to see her like this, but I know it's only temporary. The worst is behind us. Each day forward should be better with less medicine, less ventilatory support, and less fluid retention. This is just another hurdle to get her home. She will fight like she always has. She doesn't know any other way.
Happy "Due Date" Juliet Grace.
Thursday, October 21, 2010
Surgery went very well today. They put in a femoral line, repaired her hernia, and reconnected her intestines. The remaining intestines looked great - no need to remove any more. Dr. Chahine was very pleased with the way everything looked. She was in the OR for four and a half hours. She will be on the ventilator for 4-5 days as she recovers. She will probably get very puffy again as her body adjusts to everything. However, she is a fighter and will be back to her old self in no time. Once her digestive system starts moving again (usually 4-5 days), she will get to start eating again. This time it will actually get to go all the way through!
She looked fantastic this morning before surgery - dressed to impress in her jeans and tunic. ;) (forgot my camera - sorry). She was wide awake wondering why she had not gotten to eat in 12 hours. She was trying to eat everything that came in front of her nose.
Thanks for all of the extra thoughts and prayers today! We are very lucky to have so many people pulling for our little Juliet Grace. She is one special baby.
Wednesday, October 20, 2010
I wanted you to see what her stomas looked like without the ostomy bag on them. After tomorrow, they will be gone!
Monday, October 18, 2010
2 weeks old - saw her eyes for the first time
4 weeks old - Chris & I held her for the first time
6 weeks old - breathing without the help of a ventilator
6 weeks old - heard her cry for the first time
12 weeks old - out of the isolette and into a REAL crib
12 weeks old - drank from her first bottle
14 weeks old - holds her own pacifier in :)
I'll try to get my camera in there tomorrow and get some new pictures. She's over 6 pounds now! (Her due date is this coming Friday - she will be a pretty good weight by then!)
On the surgery note, she is on the schedule for this Thursday morning. Keep your fingers crossed it's a "go". We don't need ANY more delays in this child getting home! Her infection has cleared and she is fiesty again!
Tuesday, October 12, 2010
The current thought on the cause of this infection is her central (PICC) line. It has been in for over 2 months and the infectious disease doctor believes it probably has a clot that is growing bacteria at the end of it. The plan was to pull the line out this evening and give her IV nutrition, antibiotics, etc through peripheral IVs until her blood is clear and they can put in a new PICC line. The downside of this is central access lasts a LONG time. Peripheral access typically only lasts a few days before the vein collapses and Juliet has to "get stuck" again for another one. PICC lines minimize the number of times my poor little peanut has to be jabbed with a needle. So, hopefully she will clear this infection ASAP.
She had a nice visit with her big sisters tonight. The child life department had a "NICU SIBLINGS" group session tonight with medical play, arts/crafts, a lesson on germs & handwashing, and a doll with the same lines/tubes that Juliet has. The girls really enjoyed it and were especially happy that Jules was wide awake to greet them. Addison kept poking her chubby cheeks. Even a 4 year old can't resist those things. ;)
Surgery has tentatively been re-scheduled for late next week. This is dependent on Miss Juliet behaving herself. We aren't going to tell her the actual date - we don't want her trying to get out of it again.
Thanks for all of your well wishes the last few days. It was really discouraging to postpone surgery, as that was possibly the biggest step for her to get closer to home. I know that it will happen eventually...when the time is right. I just can't wait.
Sunday, October 10, 2010
As a result, she will NOT be going for surgery tomorrow. This is a heartbreaker. We were all so excited to move past this next surgery. We will have to wait until she is no longer septic. They want her nice and stable before taking her to the OR. We hope the antibiotics will work FAST and she will be feeling better again very soon.
I guess we just had too many "good" days. I should know better. Three steps forward, one step back.
Wednesday, October 6, 2010
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!
Thursday, September 30, 2010
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. :)
Monday, September 27, 2010
After her bath, we dressed her in her leopard print onesie! As you can see, the bath wiped her out!
Wednesday, September 22, 2010
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.
Wednesday, September 15, 2010
Smith Party of Five
She doesn't always enjoy her bath!
Friday, September 10, 2010
She looks so grown up when she wears clothes.
Saturday, September 4, 2010
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!
Thursday, September 2, 2010
Monday, August 30, 2010
She is now getting 2 cc's of milk every 4 hours - getting up there! :) (They started feeding her again on Saturday at 1 cc every 6 hours.) The next few weeks will consist of going up slightly with her feeds, going down on her oxygen, and letting her intestines heal and grow until it's time for her next surgery. Hopefully, she will continue to gain weight and get stronger so that she will tolerate the upcoming surgery without difficulty. Today she weighed in at 1370 g. That is just about THREE POUNDS! Some of that weight may still be some extra fluid, but we'll take it!
I will get my camera in there this week and get some new pictures.
Saturday, August 28, 2010
Wednesday, August 25, 2010
Juliet is back on the ventilator for a few days, but she is very comfortable and able to rest. This will help to speed her recovery. We know how fiesty she is.... In a few days, we will be able to get a better idea of how much the surgery helped.
Thanks for all of the thoughts and prayers today!
Tuesday, August 24, 2010
Monday, August 23, 2010
Juliet has had a great couple of days. She continues to do well off of the ventilator. She had a normal eye exam and started getting breastmilk again on Saturday. She is getting 2cc every 4 hours (5cc = 1 tsp) through the tube in her mouth. She hasn't eaten "real" food since July 17th. We have to start VERY slowly with the feeding to make sure her intestine can tolerate it. She won't gain much nutrition from the feeds, but will benefit from the enzymes and antibodies. She will continue to be on the TPN (IV feedings) for her calories, fats, proteins, etc.
On another note, the medical team has decided to proceed with the surgery for her PDA. (This is the opening in her heart that reopened after her abdominal surgery.) They will put a tiny clip into the opening to close it. The cardiac surgeon will perform the surgery right in the NICU, rather than taking her down to the OR. However, Juliet will need to be put back on the ventilator for a few days. This is scheduled for Wednesday afternoon. Like her last surgery, Juliet may have a rough couple of days immediately following surgery. We will hope this phase passes quickly and she can be back to her spunky self in no time.