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! :)