Lots of Kisses

One of Jude's favorite things to do is kiss Lily on the head. We tried to get a picture of Papa kissing Jude and Jude kissing Lily. I think Lily was enjoying it the most.

Christmas 2009

Here are a bunch of December moments including the first picture taken of the four of us - boy it took us a long time to get it taken. December was a good month - but also a bit rocky. I was off dairy and soy and then on dairy and soy and then off dairy and soy. Then we tried 3 different formulas (non-milk based - or close to it) and none of them seemed to go over very well. So we are back to just breast milk. I believe this is where we are going to stay for a while. Lily seems to be growing enough and is a much happier and active girl when she's just on breast milk. Jude loved Christmas. Unfortunately he had a fever on Christmas day. However he marveled at the sights and sounds and events of the season. Some of his favorites were peeking out his bedroom window to see the blow up Santa on our neighbors roof, driving around and viewing all the neighborhood Christmas lights, and discovering candy canes. And now? Hooray! It's a new year!!! I am so happy to be in 2010! Happy New Year everyone!

8 lbs.

Lily is 8 lbs 1 oz! Such a big girl. She's started cooing and smiling quite a bit. When she first came home from the NICU, it was taking about an hour to feed her. Her doctors put me on a non-dairy, non-soy diet to see if it would help her feeding discomfort level. However before my new diet could kick in (or make any difference for her), she improved her suck/swallow/breath coordination on her own. Gradually she's been feeding much better. A good feed will only take 30 min now and she's taking more volume. Thus, after seeing her doctor again yesterday, I am trying to go back on Soy (and later dairy if the Soy goes well). I had a Grande, Decaf, Single, Soy, Gingerbread Latte at Starbucks! It was delicious! Life is still tiring - but I think we're starting to try and get the hang of it.

Lily doesn't nurse well. That's the one thing I wish I could alter. We're trying (a bit half-heartedly I admit). She get's really frustrated trying to latch and then when she does latch, I think the change in flow throws her off. Hopefully this will get easier for her.

together...

We're doing well having Lily home. It's been quite an adjustment trying to juggle Jude and Lily, but we're slowly becoming accustomed to being a family of 4. Lily is slowly eating better and 'hopefully' gaining more weight. Last Friday, Nov 20, she weighed 7 lbs. 2 oz when we visited the pediatrician. Since then she seems to have improved on her eating coordination (suck, swallow, and breath). She chokes less and her reflux doesn't seem to bother her as much. NICU nurses -- her average feeding today was 78 mls (can you believe it?)!!! Go Lily. We hope this trend continues. Auntie Janet and Uncle Peter have been here for the last 4 days; it has been an amazing blessing to have their help. I love this picture of Papa, Jude, and Lily - it's so fun to be able to take pictures of us 'together'.

Home...On 11/11 after 111 Days...

This last Wednesday, after 111 days in the NICU, Lily was able to come home. She continued to eat well and gain weight, thus the doctor said she could be discharged from the NICU. Hooray! It was a huge blessing and relief that she did not need to have the g-ube surgery and was able to come home to us. We are so very thankful to have her home!

We went to the pediatrician on Friday. She had gained 2 ounces since leaving the hospital - so that was also a relief.

And now? Whew...we have been settling into life at home with two children. Props to all you parents out there with two or more kiddos - it takes a lot of multitasking and effort :) My life for the past 4 days has been full of making bottles, feeding lily, changing lily, washing bottles, taking care of Jude, pumping, sneeking in a bit of food myself when possible, and getting sleep when I can. Daniel and I are both a bit exhausted, but well, ... it's so good to have Lily home.

Thanks to all the NICU nurses who so lovingly took care of Lily for her first 111 days of life! Love to you...

We will see...

Lily has been off of her feeding tube for about a week now. She's been taking all of her feedings from a bottle. Some days have been good this week and some not so good (in terms of eating). She has basically eaten enough to maintain her weight, but not enough to continue growing. Thus, on last friday a surgery was scheduled for her (for this coming friday). During the surgery the doctors will laproscopically put in a small tube from outside her belly into her stomach. This is so that we can take her home and if she doesn't eat enough from a bottle, we can still feed her extra through this g-tube. The tube can be removed when it's no longer needed by a simple office visit.

That being said, we are hoping that this week, Lily might be able to begin taking enough milk from her bottle that the surgery will not be necessary. Yesterday was a fairly good day for her (she gained 20 grams) and today, so far, she has taken all 60 mls for all of her feeds. Please pray this trend continues and that each day will be better for her than the one before. Pray that she'd gain weight. We'd love to have her home -- and, God willing, possibly without her having to have surgery.

2009 Halloween

On Sunday, Nov 1st, Lily started to take all of her feedings! It was truly such a wonderful surprise. We think the prevacid they started to give her on Tuesday finally kicked in (to help her reflux). After a day of eating all of her feedings, she lost 3 oz. It was a lot. Last night it had been 2 days since she started eating and she gained 3 grams (about 30 grams to an oz). So...we continue to hope and pray she'll continue eating all her feedings and start to gain some more weight. If that happens - she'll be able to come home (maybe even later on this week)!

Here are some Halloween shots of our family. The night nurses, Sue and Nicole, made princess Lily a crown and a septor. It was pretty adorable.

We took Jude downtown Old Littleton to go trick or treating. Auntie Jenna, Uncle Mark, Super Boy Rohan, Larry Boy Asher, and princess Saige joined us.

still...

still waiting...
still coping...
still working on feeding...
still hoping.

6 lbs. 5 oz...

6 lbs 2 oz

Today Lily is over 6 lbs. She seems to be taking a step backward in eating lately. For the past 3 days, she's taken very few feedings from a bottle. It is hard to watch. I'm so connected with any of Lily's daily details. If she has a good day, I have one. If she has a sleepy day, my day is just a little more sad. On top of it all, Daniel and I have been fighting a cold (which keeps us from seeing Lily). Daniel is pulling out of his and I'm still trying to fend mine off. You'd be impressed Mom, I've even gargled vinegar a couple of times! I'm hoping and praying that somehow, I can get by without a full blown runny nose and sore throat. I have absolutely no idea when Lily will be able to come home. Please God, allow her to eat and come home by my birthday.

Little Tiny Pumpkin

Here's some pictures of Lily from her bath on Monday night. Nurse Sue picked out this sweet pumpkin outfit for Lily.

These pics were taken of Lily on Oct 1. "Shhh", Lily says, "I have a big secret".

October Fun

We had some fall fun and bought a pumpkin for Jude this weekend. He loves the little one; keeps wanting to bring it into the house and carry it around. Another favorite is 'hot chalk' (hot chocolate). Jude asks for it every day.

Due Date

October 12, 2009 - Lily's due date. Hmm, not sure how I feel about today. A little happy - a little sad. Mostly I just wish Lily was home. She is getting closer (very slowly) - but closer. Here are some updates:

• Eyes: Lily had an eye test late last week. Good news; finally her eyes are mature. That means her eyes are developing normally and she doesn't need another test until 6 months.
• Brain: Lily's doctor ordered another brain ultrasound for her this morning. The results were encouraging. The brain bleed inside of her ventricle is almost completely gone. It's hard to know what will happen with the little tiny bleed spot outside of her ventricle - but from the pictures, the doctor said it looks good. Time will ultimately tell - but we are encouraged that all will be well with her development.
• Heart: Lily also had an echocardiogram this morning. The tech said she couldn't find the small muscle whole that she saw last time - so the assumption is that the small whole closed on its own (which was what they expect to happen). I'm sure the doctor will take a look at the echocardiogram pictures and hopefully confirm this - but it's really good news.
• Weight: Lily was up to 5 lbs. 7 oz last night!

Now...if we could just get Lily to eat better. She has started to eat a full feeding (54 mls now) once a day, so she's making a little progress. But we hope and pray that she will do this more often and more consistently.

GI Test

Lily had a GI test yesterday. Since Lily has been having trouble progressing with bottle feedig and nursing, her neonatologist order the test. Debbie, Lily's nurse, and I wheeled her crib down to radiology in the afternoon. The pediatric radiology doctor put her on a large table under an enormous xray-type machine. They fed her a bottle and watched her mouth, throat, esophagus, and stomach as she swallowed. It was pretty interesting to watch. They studied her anatomy to make sure all was well. They also studied the bottle nipple and how fast or slow she could/should swallow milk. The test turned out as good as can be expected. Her anatomy is fine - structurally, Lily is perfect. She does have some reflux. Which is why she takes very tiny swallows to try and prevent too much from getting into her airways. Basically, she's a preemie. It should get better as she grows and becomes stronger.

5 lbs 1 oz

Lily is 5 lbs and 39 weeks today. She's looking bigger and bigger all the time. Crazy that she's still almost 3 lbs short of what Jude was at 39 weeks. Progress with eating is slow. We're hoping that some day (as she gets bigger and stronger) she'll just all of a sudden 'get it'. It's hard to be patient though - especially as she gets older and is awake for longer periods of time. I hate to think of all the times she's awake and I'm not there to spend time with her. The nurses are wonderful - but it still makes me sad.

Waiting...

This week Lily is 38 weeks old (gestationally). She is 4 lbs. 11 oz. It has been 10 weeks since she was born. I can't help but think I should have been very pregnant about this time and anxiously awaiting Lily to be born. Indeed it definitely didn't work out as we had planned. Nevertheless, we are still waiting on Lily. We are waiting for her to learn to eat (bottle feed and nurse). She needs to be able to eat her entire feeding from a bottle for all her feedings to be able to go home. Currently she's pretty inconsistent. She will eat half her feeding maybe a couple times of day. So...we wait. I believe she just needs to get a little bigger and a little stronger. Today I looked back at a bunch of photos of Lily. It really is amazing to see how she has grown - she was 'so' tiny when she was born. Go Lily...go. We will wait sweetheart.

Sweet pink polka-dot girl

Lily getting weighed - 4 lbs 11.6 oz

Lily asleep in her crib - see my Elephant

Blanket Grammy Sue and Grandpa John!

4 lbs

Lily is 4 lbs 5 oz today. Everything else is pretty standard - she's eating 42 mls every feeding, she's still on a bit of oxygen, and she's still working on learning to suck/swallow/breath. They did move her to an open air crib last weekend, so she keeps pretty bundled up to help her temperature.

family moments...

Here are a couple of pictures taken on September 2 - we headed up into the mountains, had a short hike, threw a bunch of rocks in the river, and had a picnic lunch with Grandma Gini and Grandpa Dan.

We gave Lily her weekly Bath today. She's 3 lbs. 11 oz (probably a bit more tonight - we'll see). She's up to 35 ml per feeding and they've taken her pulse-ox (not sure how you spell it) off. They will check her pulse-ox on Monday and Thursday - but she's stable enough that she doesn't need it monitored constantly. Here are a few pictures I finally downloaded from my camera.

big yawn...

checkin out mama (her cheeks area little red from taking off the adhesives that hold her oxygen in place.

snugglin with papa and suckin away on her pacifier...

sweet girl...

just love that hat...all cozy for another nap...

Growing...

Lily continues to grow. She is now 3 lbs. 8 oz (wow - 3 and a half pounds!). She's on just a little bit of oxygen. She receives 34 ml at each feeding. And she has begun trying to take a bottle once a day. The first time Daniel gave her a bottle, she drank 2/3 of her feeding (22 ml) - since then she's only taken about 11 mls -- but she's learning. She's also learning to nurse. It's a bit of a slow process, but she's getting there. little by little...

3 lbs 3 oz

Lily is 3 whole pounds and doing well (3 lbs. 3 oz to be exact). The nurses have begun to dress her in tiny little onsies - she looks adorable. She continues to do well on her breathing. Just yesterday, they took her off of the high flow cannula and switched her to a regular flow cannula. She's getting over an ounce of milk (32 ml) at each feeding and she's begun to try and breast feed (a little). It'll take her a little while to get the hang of it, but we're working on it.

Jude visited Lily again with us yesterday. He even got to hold Lily with Papa's help - he did very well. We were not able to get a picture of Jude holding Lily (shoot) - but we took this video just after (Lily 6 Weeks Old).

fall...

Not too much to report today. That's probably a good thing. Lily is doing really well. Her breathing is good, all her blood counts are good, she's slowly gaining weight, and she had a bath today. She's up to 2 lbs. 11 oz. Grandma and Grandpa Herron are in town and having been helping us out immensely with cooking and taking care of Jude.

I am feeling much better (seemed to have kicked this cold). Mostly...I've been anxious for and have been thinking about fall. I love fall. It is most definitely my favorite time of year. I love it when football starts (even if the broncos are a sorry excuse for a team this year -- we'll see). I love sweatshirt weather. I love it when the leaves change color and the sun shines a little less... and I love to sip a grande decaf single pumpkin spice latte from Starbucks. There just seems to be something about fall that allows me to ... take a really deep breath. There's only one thing missing ... one thing that would make it perfect ... Lily. I long to be able to take a walk in my blue hooded sweatshirt with Lily snug at my chest wrapped in a sling. That will be a good day -- having Lily always close by.