some new pics

courtesy of one of Juliet's night nurses:

This gives you a little bit better idea of her size - a whopping THREE pounds!

I woke up this morning to the picture below on my phone. The caption was "Where's The Beef?"

I think that is one of my new favorite pictures of Juliet! I'll try to get some more tommorow.

Off the Vent!

Juliet came off of the ventilator today! Yahoo! She did great - I was there when they removed the breathing tube. She looked a little shocked at first, but eventually settled down. She now is just getting some high-flow oxygen through a nasal cannula. The team will continue to wean this down as well until she no longer needs oxygen.

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.

a "sleepy" few days

Juliet has been pretty sedated since her surgery. She is on a very strong pain medicine, as well as an anti-anxiety medicine. These have kept her very sleepy over the past few days. Her cardiac surgeon removed the chest tube on Thursday night and she had follow up heart studies that confirmed the surgery's success. Her medical team is gradually weaning the above medications because until she is awake enough to take over all of her breathing, she must remain on the ventilator. Chris visited Jules last night and said she was moving her arms and legs around, but wasn't opening her eyes very much. Let's hope as these medicines get out of her system, she will start to perk up. (She also received a blood transfusion yesterday - I thought that might help, but it didn't really seem to change her alertness.) Hopefully, my next post will be that she is off the vent - and hopefully, that will be SOON!

Just a brief post to let you all know that Juliet's surgery went very well today. There were no surprises and she handled it all beautifully. Thanks to the doctors, nurses, nurse practitioners, RTs etc for a smooth day. The surgeon put 2 very small titanium clips into her heart. He actually gave us one as a "souvenir" after the surgery.

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!

Adorable!

Who knew they made such cute clothing for 2 lb babies?!

I came in to the NICU to find Jules ready for a party. Thanks Becky for dressing her and thanks Kelly for the micro-preemie outfits! She's ready for surgery tomorrow and should be back to partying-form in no time.

Preparing for another surgery...

Sorry for the "lapse" in updates! It's been a little hectic since returning home. I am SO happy to be here. It's great to be able to put Addison & Mackenzie to bed every night and to spend all day with Juliet. Chris has been going to see Juliet almost every night. It is so good for ALL of us to be together again - as a family. On Saturday, we brought the girls in for a visit. While there, we took our first picture as a "family of five". :)

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.

Notice anything different???

Juliet is EXTUBATED! No more ventilator!!! (The tube in her mouth is a feeding tube, but we have not started feeding her yet.) She has been breathing on her own since yesterday morning. She's been doing pretty well with it. Sometimes, babies have to transition to something called CPAP first, but Jules went straight to a high flow nasal cannula. (That's a good thing!) :) As you can see, she was hiding some giant cheeks under her Neo-Bar. Did you really think one of our babies would NOT have chubby cheeks?

She had 2 tests over the last 24 hours - a head ultrasound and an echocardiogram. The head ultrasound remained normal (this is is 4th normal brain scan). The echo showed a large PDA. This is an opening between the 2 sides of her heart. All babies are born with one, but they typically close on their own shortly after birth. She was treated for this during her first week of life, but it has since re-opened and is larger. I met with the pediatric cardiologist today. She is going to do another echo tomorrow and then decide if she thinks surgery is indicated. If Juliet does need surgery, it will be done in the NICU, but Jules will need to go back on the ventilator for a few days. I'll keep you posted on that one...

Thanks for your continued prayers and positive thoughts.

THANK YOU CHKD!

I must say, I was impressed from the very first moment I stepped into the NICU at CHKD.

I was terrified walking through that doorway, but when I peeked into Juliet's isolette for the first time and found her so PERFECTLY positioned in a Snuggle-Up, I knew we were in a good place. My little 1 lb 14 oz peanut looked SO comfortable and the entire medical team at CHKD made that their goal for the entire 5 1/2 weeks we were there.

I was very happy that we made it to Norfolk before Juliet was born. Working in pediatric acute care, I had definitely heard of King's Daughters and I knew it had an excellent reputation. Little did I know, I would experience that reputation first-hand. The professionalism that I encountered while there was remarkable. I met so many supportive people who "took me under their wing" and helped me to cope with the stressful situation at hand.

Thank you to the many nurses (especially Juliet's primary nurses - Kelly Ann & Kathy) who skillfully, yet gently, cared for Juliet (and her mom!)

Thank you to the doctors (attendings, residents, & surgeons) who gave Juliet a chance at life and helped her to get where she is today. You have given her a great start and she wouldn't be here without you!

Thank you to the parent support coordinators who were by my side as much as they physically could be - just short of sleeping at the Ronald McDonald House. :) (And when they weren't there, they were texting me to make sure I was OK.) Maureen & Marnie, you knew when I needed a hug. You knew when I needed to talk. You knew when I needed to cry. Thank you for being there - I needed you! :)

Elizabeth - thanks for running to me with all of the developmental supplies you could find. :) Thanks also for keeping Juliet calm during her transition to the jet - I don't think she desat'ed once! :) Thank you to the social workers, case managers, lactation consultants, secretaries, staff at Ronald McDonald House and anyone else whom I may be forgetting. The support that you showed to our entire family was remarkable.

I will miss you CHKD. Keep an eye out for us at the reunion.

Home Sweet Home

Well, I didn't want to mention it until it actually happened. Thanks to the unbelievable generosity of SO many people, Juliet has been transferred to the Georgetown University Hospital NICU - the NICU where I work. After a few "false alarms", she took her second helicopter flight yesterday afternoon (first one was in utero - barely) and arrived safely in DC around 4:00 pm. It is so good to be home! Thank you, thank you, a million thank you's to the MANY people who helped to make this possible. I am PROUD to work with such a loving, generous, supportive, and compassionate group of people.

Juliet all buckled in and ready to fly!

Away they go!

Where the princess is now holding court

First hair bow :)

Thanks for the bow Kelly Ann! Here's a better picture of Juliet with Kelly Ann:

what's new?

not too much..... Juliet is now 5 weeks old. Her personality continues to emerge. She is becoming more active and alert. She continues to show her fiesty-ness and her desire to be the center of attention! Uh oh!

Her extra fluid has finally gone down enough for the team to find out how much she ACTUALLY weighs. Before, they were just kind of guessing, since she was so swollen. It turns out, Jules is now a whopping TWO and a HALF pounds (1100 g). Go Juliet! Over 1000 grams! Once they determined a more accurate weight, they were able to increase her lipids/proteins accordingly, so she should start to gain a little more.

Her incision has started to open up, but the GI nurse practitioner put a fancy dressing on top of it to keep it clean and infection-free. The surgeon saw it yesterday and said it still looked good. Preemies have such fragile skin - it's not uncommon for this to happen.

I was able to kangaroo her again on Friday. My friend, Shannan, was here and got a few pictures - see below.

One of Juliet's primary nurses - Kelly Ann!

(cell phone pic)

Our little night owl! (video)

Juliet was WIDE awake again tonight. She was just sucking away on her breathing tube. Let's hope this sleeping pattern changes in the next few months before she comes home. (She slept almost all day!)

Kangaroo-ing

Hiding under that blanket is a miniature princess!

(*Kangaroo Care is when parents hold their baby skin-to-skin. The parent's skin temperature helps to keep the baby warm. Kangaroo Care has been proven to help babies normalize their vital signs, reduce their oxygen requirement, decrease stress and pain levels and gain weight. All of these things can lead to a quicker discharge to home. If all of this can come from cuddling with my baby, I will do it all day long!)

Wide Awake

Juliet was SO awake tonight. She is on less pain medicine - which was also sedating her a little. And, she's not as swollen, so it's easier for her to open her eyes. She was awake and looking at me for 20 minutes. I just held her hand and smiled at how good she looked.

Just hanging out...

Juliet has just been hanging out the past few days. No major changes. It's a good thing when I don't have too much to write about!

She's been a little more alert the last few days. Last night, I lifted up her isolette cover to find her WIDE-EYED and staring right at me. She was just lying there awake, in the dark, thinking about who-knows-what! :)

My FAVORITE part of the day yesterday, was GETTING TO HOLD HER! Her nurse let me hold her for an hour! It was so fantastic. I sang quietly to her. I told her stories about her sisters and her dad. I told her how many people are cheering for her and waiting for her to come home. She would open her eyes and look at me every so often, but for the most part, she just snuggled in to my arm with a look of content on her face. That was definitely the highlight of the last month.

I will say "holding her" isn't quite like holding a typical newborn. She had ELEVEN different lines or tubes attached to her. She was covered with several blankets - only her little face was peeking out. We both had to sit under a heat lamp and at one point, the nurse put a blanket over BOTH of our heads in attempt to block some of the bright light from her eyes. It was like we were in our own little tent -- a very hot tent. :) I can't hold her every day yet...but eventually that will happen. I'll be patient. This entire journey will be an exercise in patience.

One Leg Out

Juliet is just like her dad and sister, Addison -- she likes to sleep with "one leg out". No matter how many times I tuck her little foot into her Snuggle Up, she wiggles it out. Evidence below:



Juliet had a relatively quiet weekend. She seemed very comfortable and continued to require LESS and LESS ventilatory support each day. She is a little bit more swollen, but that is to be expected after her surgery. The doctors added one more antibiotic (Vancomycin) to her artillery of meds. Other than that, no real changes have been made over the past 3 days. I'll take it. Grow baby girl, grow!

Four Weeks Old

Juliet was still sedated from surgery in these pictures...




(To the Georgetown NICU employees that may be reading this blog: Juliet's head DOES get turned to the right and even sometimes to midline. I tend to only take pictures of her when it's turned to the left because the lighting is better. Don't worry, I'm on top of the torticollis! ;) Love you guys!)

Holding Juliet for the First Time

Before Juliet went down to surgery, we were able to hold her for the first time. It was SO nice to be so close to her. I could have held her all day! Hopefully, we will get to do it more often, once she stabilizes from her procedure.

surgery went well....

Oh my goodness....you all are amazing. The prayers, love and support that Juliet has been given today has gotten her through her surgery. She was in the O.R. for a little over 2 hours and is now back in the NICU settling in. She looks pretty good right now. She is still sedated, so we will see how she feels about everything once the sedation wears off - she may be a little more angry about the whole thing. :) The doctors are all telling us the next few days are going to be a little rough. She will probably get more swollen, need more ventilatory support, pain control, etc. Her body needs to recover from the trauma of the surgery. Hopefully, after that, she will be able to start to really heal and get stronger.

The surgeon was not quite sure what she was going to find when she opened up Juliet's abdomen. I won't get into too many of the details, but in summary, she found an obstruction in her intestine and a lot of "air and poo." Those were her exact words. ;) There was NOT an abcess on her liver, it was just a pocket from her intestines that was pressing down on her liver. They did have to remove a small section of Juliet's intestine. As a result, she has an ostomy until she can grow a little more and they can reconnect her intestines. Right now, they are just trying to give her intestines a rest so they can heal. She will need another surgery in a few months to reconnect her and possibly repair sections of her large intestine that were involved in this obstruction. This is just the beginning for her, but hopefully today's surgery was the "scariest".

Chris & I did get to hold Juliet this morning. It was WONDERFUL! Chris held her first and as soon as she got in his arms, she opened her eyes wide to look at him. Of course, I took pictures! We also did her 4 week "photo shoot" after she returned from surgery. I'll post those pictures later today.

Thanks again for all of your prayers and thoughts today. Juliet is stronger because of all of you.

going to surgery tomorrow

Well, we found out this morning that Juliet will be having surgery tomorrow morning. The medical team feels this is her only chance to get better. They feel it is best to perform the surgery sooner rather than later, because she is relatively stable right now. If they wait, she may become sicker and then have even more difficulty tolerating the surgery.

Juliet spent the day getting "tanked up" for surgery. They gave her blood and platelet transfusions. They weaned her off of the jet ventilator and back to a conventional ventilator, since the jet can't really go down to the OR. Which, I will add, she did fantastically with. They spent all day decreasing her settings - she was telling us she really didn't need to be on that jet ventilator anymore. She looks good today.

She will go into surgery mid-morning. The surgeon will perform an exploratory laparotomy. They will closely examine every centimeter of her intestine, as well as liver and anything else that concerns them. They know from the study yesterday, she has an obstruction in her small intestine. This will need repaired and may require removing a portion of her intestine. She may or may not need an ostomy after this. It will depend on how much intestine is involved. They also will be removing the abcess on her liver. It will be a very complicated surgery - particularly on a patient that weighs 2 lbs. The surgery will take several hours to complete.

Chris & I are going in to the NICU early tomorrow morning. The nurses are going to let us hold Juliet for the first time. It will be a very special time to tell her how much we love her and give her strength to get through surgery. I can't wait.

Please continue to send positive thoughts and prayers to Juliet. She has a very big day tomorrow. She needs all of the strength she has and strength from all of you to make a quick recovery. I'm not sure if I will get an update up tomorrow night, but I will do my best. Thank you so much for your continued support of our family.

And the ride continues...

So sorry for the lapse in updates. The last few days have been (again) a little difficult. Juliet's blood cultures are still negative, however she now has a new issue. Yesterday morning they discovered an unusual bit of air? on her morning x-ray. They watched it closely all day, wondered if it was normal gas in her intestine, got an ultrasound to look closer, and then determined there was an abcess on her liver. The doctors aren't sure how long it has been there, but agreed to just keep "watching it". By yesterday evening and into today, the size and shape of the "blurb" on the x-ray continued to change and grow. It is now quite substantial in size. This afternoon, they put some contrast liquid into her stomach and watched as it travelled into her intestines. What we now know is that the air/"blurb" is NOT gas in the intestine - but the doctors still aren't sure exactly what it is.

Now, the problems are - what is going on in her abdomen and how do we fix it? The team is still trying VERY hard to avoid surgery. With Juliet still on the jet ventilator and still so small, it would be a VERY risky surgery. The current plan is just to x-ray her often and watch her clinical stability. Any major changes to either of those things may result in an unavoidable surgery.

Tomorrow morning I will meet with the surgeon and her neonatologist to determine the next step. I really hope it's not surgery. (I'll keep you posted)

Good news!

I'm a little bit scared to write this...the last time I wrote it, I jinxed us. BUT.....we have now had TWO consecutive days of negative blood cultures and TWO consecutive days of good platelet levels without transfusions! One more day of negative cultures and Juliet can get her PICC line back. That will cut down on how many times they will have to "stick" her. She is running out of spots for IVs. Because she is so tiny, her veins are very fragile - IV's don't usually last too long before her vein collapses. The PICC line is semi-permanent and will be a huge help.

Chris is coming down for a visit today. Jules loves her daddy, so hopefully, she will continue to behave. We want this upward trend to continue!

Thank you for all of your thoughts and prayers. Keep it up! :)

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. :)

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.

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.....

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.

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....

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.

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!

~Jess