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.

Gained one pound...

Lily has gained one pound since birth. Today she is 2 lbs. 9 oz. Daniel and I had a meeting with Lily's doctor and couple of her nurses yesterday. We talked all about how Lily has been doing and what to expect in the coming weeks. Lily is really doing amazingly well. She had her 4th (I think) brain ultrasound on Wednesday this week. It came out well. The blood clot in her brain continues to shrink (just what they want to see). Her breathing is good. Doc said they will be thinking about stopping her doses of caffeine this coming week and possible switching her from high flow to a nasal cannula (if she does well). Next week Lily will have another eye test and at some point in the future, a hearing test as well. They continue to try and adjust her feeding to help her gain weight - the doctor said they'd check how much protein she was getting - to be sure she's getting enough - and possibly add some protein powder to her feedings if she needs it.

One of the biggest answers to prayer this week has been Lily's hematocrit levels (in her blood). On Wednesday, they were a bit worried as her level was low (25). The first time Lily's blood crit was low, they gave her a blood transfusion. The second time, they gave her some medicine. We certainly were a bit worried, hoping she wouldn't need another transfusion. But Praise God - on Thursday, she was back up to 31! It was really good news.

Aunt Lydia has been here helping out this week. We have been very thankful for her. Daniel and Lydia went to the hospital last night and Lydia held Lily. Here are a few pictures...

Lily's nurses say she's an active little one always moving and scootching about - she was all askew when Daniel and Lydia when to visit.

Auntie Lydia and Lily

Grandpa John holds Lily

Yesterday, Grandpa John was able to hold Lily for about an hour. I am still sick (recovering from a nasty head/throat/cough/runny nose cold). And now Daniel is starting to get the cold too. Boy, are we a mess! So -- we asked Grandpa John to hold Lily for us. He was fully initiated as Lily spit up some milk on him. Grandpa had to yell, 'Help' to get the nurses attention. :)

Lily is up to 2 lbs. 7 oz. She hasn't gained any weight these past couple of days, so her doctor has been upping her calories and the amount she receives little by little. We're hoping that she'll get to where she gains about an oz. a day. She has another brain ultrasound tomorrow. It's just one more precautionary check - we assume everything will come out fine.

4 Weeks Old

Lily is 4 weeks old now. She is up to about 2 lbs. 4 oz. and the doctor put her back on high flow for breathing. She also had an eye test this week. They look to make sure her optic nerves are coming together correctly. In preemies, the nerves are often just not developed yet. This is the case with Lily. Currently she has no problems; her eyes are just under-developed --- and it's just something they watch to make sure her eyes develop correctly. They'll test her again in two weeks.

Unfortunately, I haven't been able to see her since Monday (I have an awful cold). It's a bummer -- I really miss being able to hold her. Daniel has been faithfully going in and holding her everyday. Auntie Lydia (Daniel's sister) arrived late last night to help take care of Jude for a week - we are so happy to see her and have her help!

We continue to receive phone calls, emails, and delicious meals from so many family and friends. Thank you so much to each and every one of you. Thanks also to those of you who live out of town or state and have stopped in or called to support us - we love you! Thank you for your prayers - we appreciate them and continue to covet them for Lily.

Bath Time...

Yesterday, Daniel and I gave Lily her first bath in a little tub. I think she enjoyed most of it. It was a lot of fun to be able to see her without all her cords and breathing mask on. Here are a few pictures...

2 lbs!

Lily weighs 2 lbs. today - hooray! The nurses gave her this sweet little card to display by her bed to congratulate her. Not much else to report - she's doing well breathing with the cpap mask and she's up to 20 ml of milk every 3 hrs. Love you baby girl!

3rd Brain Ultrasound

Lily had her 3rd brain ultrasound today. It turned out well. The doctor said the blood clot in her ventricle had gotten a tiny bit smaller again. This was good news. I guess it will take months for her body to entirely clean up the blood clot. It was good news that there was no new bleeding and that the blood clot hasn't blocked the ventricle passageways that allow her spinal fluid to flow. Everything looked stable.

Other news... Lily is off of her IV. She is getting 18 ml of milk today. She is back on her CPAP mask for breathing. They took her off of the high flow because she was having a hard time with it. They will probably go back to the high flow in a couple of days. And she's 1 lb. 15 oz today! Yeah... 2 lbs here we come!

That's all I got for tonight - it's late - and I'm wiped out. Love to everyone. Thanks for all the prayers and emails and comments we've been getting. We are encouraged by them and so appreciate the personal notes.

Band about my wrist

I am still wearing the baby band around my wrist that the hospital gave me when Lily was born. It identifies me as Lily's mom and gives me access to the NICU. Daniel has one also. Funny the things people notice when I'm out shopping or in a doctors office - so often they comment on my wristband and of course ask about my baby. "Oh, you had a baby girl - Congratulations - what's her name - how much did she weigh?" I'm beginning to dread this particular conversation. I often consider lying, just to avoid the rest of the story. It is difficult to answer, "My daughter Lily weighed 1 lb. 9 oz.". It's almost unbelievable - so tiny - less than 2 boxes of butter. But ...well... I answer truthfully, sometimes with slight tears in my eyes. The other person is always kind ... and then I remember that she is in excellent care, she is growing ( 1 lb. 14 oz. today), and ultimately God is watching over her.