the shirt says it all

thanks to the ladies of bladework.....

first night out

Lila has been having a bit of colic lately so we have been home bodies, but we decided to take a chance and go to noodle and co. She did alright. I have found this little lady just likes to be held. She is making up for all that lost time in the nicu when the nurses made me put her down.

friends....

I died after I looked at this picture and saw that cubbie was licking Lila!

Cubbie is loving Lila, a little too much! She loves to lick her. So gross. She also loves to cuddle.

Welcome home Lila!!!

My girl came home today!! We are so excited to have her home. I love this little lady!

New pictures

Poor girl, she gets so tired trying to reach her feeding goals. This is her exhausted face.

I love this hair! I really hope it doesn't fall out

I had to catch these pictures of Lila without a feeding tube in. We are trying a new approach, she is just going to breast feed and if she doesn't loose weight than she can go home. I'm trying not to get my hopes up.....

update

A bit of an update.... Lila has been off oxygen for over two days now with really strong saturation levels! Yeah! This is a nice little victory for us. She is doing really well in that area. Now if we could just get that girl to eat (I wish that was my problem in life) The doctors think that she got a bit of a bug and has just not felt up to eating. Her white blood cell count was just a little high, like someone fighting a cold, but they are back to normal now after a round of antibiotics.
I have felt more at peace these past few days. As someone who has taken care of a child with cystic fibrosis for eight years I was definitely thinking the worst, especially with her being on oxygen for so long. But after Sara (Lila's pediatrician, and Williams mom) talked to the NICU doctors and has read her tests and scans and felt really good about the situation I have felt better. The doctors really feel that Lila was misdated and that she was born at 36 weeks. That alone could have landed her in the NICU to work on feeding and breathing issues but combined with the miconium intake and getting a bit of a bug it is no surprise that she has been there that long. Sara says that those little 36 weekers are so frustrating because they look so normal but they take a while to eat on their own and feed on their own, and that they can do really well for a few days and then crash and not want to do anything. I think that we pushed Lila really hard in the beginning and that she just needs time. Frustrating!! But it is nice to have more peace. Believe me I have begged for every test and lab that there is to see if something else is going on and I really think that she just is not feeling well. Now that we are off IV's and oxygen we just need to work on eating. Which today she breast fed for the first time and really did amazing! I thought that option was done for us but she really took off and did well.
So unfortunately it is just a waiting game. But I am happy that she is getting the care she needs.

two weeks later.....

Today is Lila's due date. It's crazy how you can look forward to a date for so long and then once you get there circumstances have changed so much. We are still in the NICU. Who would have ever thought that we would be here this long? Especially with no end in sight. It seems to be a balancing act with Miss Lila. If we take her off her oxygen then she stops eating as well. If she eats well then her oxygen levels go down. I keep waiting for that "light bulb" to go off that all the nurses keep talking about. They have done chest X rays and labs and everything is checking out normal, but it is hard for me not to jump to conclusions, that she may have some genetic disorder that they are not finding. This really has been the most trying experience of my life. I apologize to those of you who have called and I have not returned your calls, I fear you would not be able to understand me through all the sobs. I am trying so hard to be strong and not fall to pieces but I'm not doing the best job at that. This experience has brought a whole new perspective to my life. The only thing that truly matters in this life is the health and happiness of your loved ones. If you happen to be lucky enough to have strong and healthy children please don't take it for granted. I would do anything to get my little girl home and in good health.
Lila- if you read this when you are older, you should know how many people love you and pray for you and think about you constantly. You are my whole world now, you and your dad. I love you more than anything. Nothing matters as long as you are alright.

one step back.....

Today has been the hardest day by far. Lila had to go back on Oxygen. I got my hopes up way to high that she was coming home and now I am completely devastated. It has been so hard for me not to jump to conclusions. I have been assuming the worst case scenarios and have been driving myself absolutely crazy. So Lila will be in the hospital at least a few more days but more likely she will be there for quite some time.

A tubeless Lila (for now)

Look at my gorgeous baby with no tubes !!! This is the first time I have seen her without them since she has been born. She is so cute!
Lila is doing better. Quinn and I noticed that the only time she wasn't eating was at the feedings that we were not at, so last night Quinn and I went in for the 2:30 and 5:30 am feedings and she ate! So we were feeling like the end was near. Unfortunately at the 2:30 pm feeding the nurse said she noticed that Lila's respiratory rate was too high. She is taking short shallow breaths. So the tubeless Lila may or may not last. If she still has a high respiratory rate in a few hours both tubes have to go back on. I am trying so hard not to be discouraged! It is so hard. We thought that she was doing so amazingly and now we have a new hurdle to climb.
I am so lucky to have Quinn. He has stayed so positive through this whole experience. He has the best attitude. What a lucky girl Lila is, she is going to have the best daddy. Quinn didn't even hesitate to go in at night. We have both had about four hours of sleep and yet he is so upbeat and excited. I have my meltdowns but Quinn is my rock.
We are so excited for the end of this experience and to get her home. I have so much respect for those mom's who have shared their experiences with me. Hopefully someday the nicu will just be a bad dream....

two steps forward one step back

It is so hard not to be discouraged when your baby is in the nicu. Everyday is a different victory or set back. Unfortunately my little girl had to be put on a feeding tube yesterday, she just wasn't meeting her feeding goals and they were scared that she wasn't getting enough nutrients/calories. I feel like I was holding up really well till they had to put that tube in. Now I am just a little weepy. But I am so happy to know that she is getting what she needs. So sadly the hope of going home Tuesday is not going to happen, it will be a few more days at least. I just can not wait to get this little one home.