Thursday, September 30, 2010

Making Progress

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

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

Monday, September 27, 2010

What's going on in bed spot 18?

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

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

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

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

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

Wednesday, September 22, 2010

Puttin' on the Ounces!

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

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

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

Wednesday, September 15, 2010

Growing Big & Strong

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

Smith Party of Five

She doesn't always enjoy her bath!

Friday, September 10, 2010

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

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

She looks so grown up when she wears clothes.

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

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

Saturday, September 4, 2010

8 Weeks Old!

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

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

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

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

Thursday, September 2, 2010

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.