Friday, July 30, 2010

Fresh from a bath...

(I promise, she can open both eyes...her left one is just a little swollen tonight.)

A short-lived "negative"

Well, the negative blood culture was short-lived. Yesterday's blood culture is positive again. Arrrrrggggghhhh. The doctors increased the doses of both of her antibiotics - maybe that will help.

The surgeon removed the drain from her abdomen today. He took a good look at her abdominal x-ray and thoroughly examined her and is generally pleased with what he sees. Juliet still has a LOT of fluid in her abdomen, but she has a lot of extra fluid in her whole body. The biggest question remains: "where is the infection coming from and why aren't the antibiotics working?"

She continues to require daily transfusions of either blood or platelets (& sometimes both). She is still on the jet ventilator, but has remained stable & requires just a little bit of extra oxygen.

Today, she is extra fiesty for some reason. She keeps looking at me like "why does everyone keep messing with me??"

Now, it's just a waiting game. Waiting and watching. Waiting for negative cultures and good platelet levels and watching her clinical stability.

As the surgeon left today, he said "I hope you have a boring weekend!" ME TOO! I hope we have a very boring weekend. :)

Thursday, July 29, 2010

3 Weeks Old

Today is Juliet's 3 week birthday. The last week has been even a little rougher than the first two. You'll notice in the picture below that she is very swollen. The yellow "ear muff" is to block some of the noise from the jet ventilator. The jet is providing 420 "vibrations" per minute and tends to echo inside of her isolette. She keeps running out of locations for IVs so she now has one in her scalp. I will say, even though all of this "stuff" seems very uncomfortable, she is staying fairly relaxed. (She has the help of some Ativan and Fentanyl to keep her comfortable, but whatever it takes...)

The BEST news of the day: her blood cultures from yesterday morning remain NEGATIVE! Let's hope this trend continues....we need several more days of negative cultures. We have the first one, now let's keep it up.

Wednesday, July 28, 2010

A day of tests

Juliet had a relatively stable day. They were able to significantly reduce her oxygen requirement today. Thanks to some additional medicine, she remained comfortable (and a little sleepy). Nana & Aunt Autumn came for a visit. Jules didn't open her eyes for them, but she did raise her eyebrows and wiggle her toes when they talked.

She had 5 "tests" today: a chest x-ray, an echocardiogram on her heart, a cranial sector scan on her brain, an ultrasound of her kidneys, and a peripheral vascular study. The doctors are trying to make sure nothing is being overlooked that may be contributing to her inability to fight this infection. She had a VERY busy day. ALL of the above tests were normal. I guess this is good, but it doesn't give us any more answers to what is going on.

I'm not sure what the plan will be now. I will be sure to get to the NICU early tomorrow morning to sit in on rounds and ask "what's next?". (I'll also try to have Juliet's 3 week photo shoot tomorrow.)

Keep the thoughts and prayers coming...

Needing a "good day"

Remember that roller coaster I just talked about? Well, we are in desperate need of a "good day" to make up for the several "not-so-good" days we've had.

Juliet's tiny body is trying SO hard to fight this blood infection. As a result, she is needing multiple transfusions a day, and she is now on a different type of ventilator. On Tuesday, I returned to Norfolk to find them putting Jules on the jet ventilator. It gives her more "forceful" breaths to try to increase the amount that her lungs are expanding. Yesterday, she was requiring MUCH higher levels of oxygen (up to 100%)in order to keep her vital signs in an acceptable range. She is very swollen (actually has a double chin) and was given a dose of Lasix to try to help get rid of some of that extra fluid.

The doctors have ordered SEVERAL tests to try to find some explanations for her most recent behavior. They will look at her kidneys, her heart, her brain, and her abdomen. All of the tests will be done today. Her blood cultures (that they take EVERY day) continue to grow bacteria.

As of this morning, she seems to be a little more comfortable. Her oxygen requirement has dropped to 30% and her chest x-ray showed a little more lung expansion - which is good. We really need today to be a better day.

I should also add a little "Happy 2nd Birthday!" to Juliet's big sister, Mackenzie. I can't wait until we are celebrating Juliet's birthdays.....

Saturday, July 24, 2010

The Roller Coaster

I'm already NOT a fan of the NICU Roller Coaster. Juliet had a few good days early in the week. Then, on Thursday night, she started looking very sick. SO much that her nurse almost called me in the middle of the night. The medical team made several changes to her care that night and by morning she was looking a little better. Her tiny body is working so hard to fight the blood infection. She is requiring blood (and/or platelet) transfusions almost daily. She is really at a disadvantage trying to fight this with basically no immune system and such an immature body. Her blood cultures continue to come back positive. Right now, this is her biggest risk. We NEED the infection to clear.

On a positive note, her 2nd cranial sector scan came back normal. This is fantastic. Preemies are at risk for brain bleeds - these can cause long term issues in many areas. The fact that her brain continues to look good is a great sign.

Additionally, her lumbar puncture was FINALLY done yesterday and came back normal, as well. This means the infection has not spread into her spinal fluid.

Juliet continues to need very little support from her ventilator. If she were not so sick with her infection, the doctors would consider taking her off of the vent fairly soon. It is just too risky, though, while she is still septic.

Today, I was able to assist in her hands-on care. I changed her diaper, cleaned around her abdominal drains, and repositioned her into a cozy little bundle. It's nice to actually be able to interact with her.

So, there are definitely some good days and some bad. Let's just hope the good ones far outnumber the bad. I said to a nurse yesterday - "I know it's going to be a roller coaster. I would just prefer if it were the "kiddie ride", with little hills instead of big ones."

Here's Lookin' at You

Juliet is becoming more alert. Over the last 2 days, she has been opening her eyes and checking out her new environment. Yesterday, she held onto my finger for about 15 minutes. It was so nice to be able to touch her. She has never been outside of her isolette, so the most contact we can have right now is holding hands. I can't wait until the day I will be allowed to hold her.

This is actually Juliet spending some "quality time" with her Aunt Autumn.

Thursday, July 22, 2010

103 Bottles of Breastmilk in the Freezer....

Take one down, pass it around.....

This is how I spend my spare time. ;) EVENTUALLY Juliet will need it.

Two Weeks Old!

Today is Juliet's TWO WEEK birthday! She has had a BUSY 2 weeks - let's hope she starts to settle down a little bit.

She has recovered slightly from her surgery/set-back on Sunday. Her ventilator continues to be gradually weaned. She is actually on very low settings right now. However, with her sepsis, they are hesitant to take her off of the ventilator too soon. She no longer need medicine to maintain her blood pressure. Most importantly, her "fiesty-ness" is starting to come back.

Her blood infection (sepsis) remains serious. They changed one of her central lines today, in hopes that would improve her infection (the bacteria could've been growing inside of that line). Her test to check for meningitis (lumbar puncture) has been postponed for the last 2 days because her platelet count is low. This is to be expected if you saw how much blood they have to draw each day for various labwork, blood gases, etc. Also, her body is trying to fight the infection, so is using all of her blood cells to do so. She received her 3rd blood transfusion yesterday and received platelet transfusions last night and tonight. Hopefully, they will be able to do the lumbar puncture tomorrow.

She also had another cranial sector scan (head ultrasound) today. They just want to be sure that her traumatic day on Sunday did not cause any changes in her brain. I should find out the results tomorrow morning.

I finally got to talk to someone from the surgical team today. The nurse practitioner came to answer my questions about their plan. As of now, they are happy with her progress. The drains in her abdomen continue to drain less and less. They are hopeful that by NEXT weekend they can remove the drains and the tear in her intestine will have closed on it's own. If her infection has improved at that point, they will assess restarting her feeding. (Right now she is just getting nutrition through an IV.) They may do a test (contrast study) to examine her intestine before starting feeds or they may just try a little bit and see how she tolerates it. Her behavior over the next week will determine what they decide.

A BIG milestone today.....Juliet opened her eyes for the first time! I tried so hard all day to get a picture with her eyes open, but she wasn't cooperating. :) I did have a mini photo shoot in honor of her 2 week birthday. Here's the peanut!

Here is Juliet's current home - POD D - Bed 17

These are the 2 hospitals that we have been patients of in the last 2 wks. Norfolk General is the brown building on the left. Children's Hospital of the King's Daughters is the white building on the right.

Here is my current "home away from home" - check out who's on the front porch. :)

My transporation to Norfolk General....

Tuesday, July 20, 2010

Thank you Georgetown...

for your love, support, generosity, and especially for the "Hello Kitty" isolette cover! It's so much cozier now! You all are amazing!

A Rough Day

Unfortunately, Sunday brought the biggest complication that Juliet has faced. Her intestine perforated and she needed surgery to place 2 drains into her abdomen to release the free air that was now in her abdominal cavity. As a result of her perforation/surgery, her body went into slight shock. She required much more ventilatory support, medicine for her blood pressure, and of course several antibiotics. They also started a Fentanyl drip for pain and some light sedation. Her kidney function slowed (but has now returned to normal).

Her biggest risk right now is infection. She now has a blood infection, as a result of her perforation. Tomorrow, she will have a lumbar puncture to make sure the infection hasn't spread and caused meningitis. Hopefully, the many antibiotics she is on will fight this infection quickly without too many more complications. I'm still waiting to talk to the surgeons to grasp their plan for her. She won't be given any breastmilk for several weeks while her intestine is healing. Beyond that, I am unsure of the next steps.

Today, she seems to be feeling a little better - she's a little more active. They have been able to decrease her ventilatory support a little bit. She no longer needs the blood pressure medicine and her kidneys are back to normal. Now that they know the specific bacteria that is growing in her blood (enterobacter), they have stopped some of the antibiotics that aren't as effective on that specific bacteria. Let's just keep our fingers crossed for tomorrow's test.

The picture below is actually from Friday. She just looked so "comfy"! I hope that she will look like this again very soon!

Thank you all SO much for your birthday wishes, cards, packages, cupcakes!, phone calls, texts, emails, etc. etc. It made my day a little bit better knowing how many people were thinking of us. We have such amazing friends and family! I tell Juliet every day how lucky she is to have so many people pulling for her.

Visiting With Her Sisters

Chris and the girls came down on Saturday for 2 days. It was SO nice to have them here. We all stayed in a hotel on Sat night - swam in the pool - slept in a comfortable bed - it was great! Both Mackenzie and Addison got to spend some time with Juliet on Saturday afternoon. Addison sang lullabies to her and Mackenzie tried to touch everything possible! ;) They both look SO BIG to me now. They've grown up so much, just in the last week.

Friday, July 16, 2010

Juliet's First Week

Yesterday was Juliet's one week birthday. She is now 26 weeks since gestation. In the last week, she has had 11 x-rays, phototherapy, 2 Echocardiograms, 2 blood transfusions, a cranial sector scan (head ultrasound), and a needle aspiration of air on her lungs (pneumothorax).

She started getting breastmilk through a tube that goes into her nose and down to her stomach (NG tube). She's getting 1 mL (1/5 teaspoon!) every 3 hours. (Sometimes I get to hold the syringe while it goes in - takes about 10 seconds)

She's had 1 bath - I got to help! - they washed her hair with a little soft toothbrush. :) It's amazing how much hair she has already. I can't imagine if she made it to her due date - she would have been hairier than Mackenzie!

She continues to breathe with assistance from a ventilator. This is to help her along until her lungs are mature enough to do it alone. They constantly adjust the settings of the ventilator up and down to make sure they are giving her just the right amount of help - not too much and not too little.

Her weight today was 760 grams (1 lb. 11 oz.) - she has just started gaining weight back from her initial loss after birth.

She is quite a little trooper. She has taken each challenge in stride and continues to make progress toward getting off of the ventilator. She is so fiesty already! She definitely lets you know when she is mad at you! She LOVES lying on her tummy and LOVES being LEFT ALONE! She's a fighter and I am SO proud of her!

Tomorrow, Chris, Addison & Mackenzie are coming down for a visit! I am so excited - I miss them SO much! I'll try to get some more pictures!

First Photo Shoot

On Sunday night, our nurse let us have a little photo shoot. Chris was returning home to start work the next day and she wanted him to have some mementos.

Juliet was under the phototherapy lights, which is why she is glowing blue and is wearing eye shields around her head.

Chris' wedding band around Juliet's arm!

First Time Meeting Her Big(gest) Sister

Addison got to meet Juliet on Friday, July 9th. My parents, Adam & Autumn, Mackenzie & Addison stopped by the NICU on their way home from the beach. Juliet was still on "isolation", so we all had to wear the yellow gowns. Addison fell in love with her new baby sister immediately! Ever since then, everytime she talks to me on the phone she asks about Juliet. "How's my baby sister?" "How many days until Baby Juliet comes home?" "Is the baby doing OK?" "Tell my baby sister I said 'Hi'!" (Mackenzie hasn't met Juliet yet, but maybe will tomorrow when she comes back for a visit)

First Photo

The very first time I saw Juliet, I found her snuggled up so nicely in her isolette. I knew she was in a good place when I found her so perfectly positioned.

The Blog

In an attempt to keep everyone in the loop about Juliet, I have created this blog. I will update it frequently and will include some pictures so you can watch her grow. Hopefully, this will help to field some of the phone calls and emails. I know that everyone is thinking of her and wants to know how she is doing. This will be a way for me to get the info out to everyone with the least time constraint to me.

Please know that I love getting your phone calls and emails. However, I will probably not have the time to return every call. I hope you understand and will come to this blog to get updates.

Thank you SO much for the love and support you have all shown our family over the last week. It is so touching to know what an awesome community we are a part of. With all of the people pulling for her, Juliet is bound to grow to be a strong and healthy Smith girl.

Thanks for keeping us in your thoughts!