What I've been up to...

I haven't experienced what it is like to bring home a newborn just days after the baby is born.  But being the mom to a baby in the NICU is not an easy thing and takes alot of will power to keep going on.  Not to say I am any busier than any other new mom and I am sure life will not slow down once Willa does come home.  My daily schedule when I work in the mornings and go see Willa in the afternoon looks something like this -

6:00-6:30 am - wake up to pump, wash up, and put away parts
6:30-8:00 am - get ready and get some work done
8:00-8:30 am - call to check up on Willa
9:00-9:30 am - pump again
9:30-noon - get some work done
noon - 1:00 pm - pump and eat lunch
1:30 pm - leave for Wichita
2:45 pm - change Willa's diaper and take her temperature
3:00-3:30 pm - pump again
3:30-5:45 pm - hold Willa
5:45 pm - change Willa's diaper and take her temperature
6:00-6:30 pm - pump again
7:00 pm - say my goodbye and head home swinging through Wendy's across the street from the hospital (not going to eat at Wendy's for a very long time after we are home although Frosty's are my new favorite.  Yum!)
8:15 pm - get home and try to get one thing done for the night
9:00 pm - pump again
11:00 pm - pump one more time before bed
3:00 am - wake up to pump
and the cycle starts over...

I joked around with the NICU nurses the other day.  I'm going to be sad when I have to give back the pump the hopsital loaned to me.  I think we have bonded.  Breastfeeding is supposed to help bond you with your baby.  Instead I have bonded with a machine.  There is something wrong with that :P And with all that pumping I have a pretty good stash.  I counted up I have about 450 two ounce bottles in my freezer.  That is around 900 ounces.  Some or maybe even most of it won't get used, but dang it I have something to show for all the pumping I've been doing.

And with that, I'm off to pump again!

Our Merry Little Christmas

Willa had a busy week last week.  Santa came to visit, she was photographed and interviewed, and had time to do some sleeping and growing.  Willa made 5 lbs even on Christmas day.  Just a few days earlier we were interviewed by a writer with the Wichita Eagle.  We knew it was going to be in the paper this week but I had no idea it would make front page news.  Definitely something cool to have for Willa's scrapbox.  I wish I was creative and had time to do a scrapbook for her, but I just don't have it in me.  But I did go buy a cute box to put her stuff in.  It makes me feel a little better that the box is cute and not just an old shoe box :)  If you missed seeing the article you can click here.  Santa came to visit that day as well.  The hospital put together a video of all the babies that Santa visited.

We spent Christmas day with Willa and brought her all the presents Santa delivered. We wish she could have been home for Christmas but we made the best of the situation.  Here are some pictures of Willa during her holiday week.

Hope you all had a Merry Christmas.  We are looking forward to 2012 and bringing home Willa.  Hoping that is soon and very soon!

Getting lots of loving

My parents, sisters, 91 year old grandma, and Mitch's mom came to see Willa this past weekend.  Grandma last saw Willa when she was 1 pound 11 ounces.  So she was very excited to see the change.  I'm pretty sure my grandma jumped (not even kidding...I hope I can still jump when I'm 91 and use a cane!) when she came to tell me she got to hold Willa.  This week was the first time family members have been able to hold Willa so I had to include a picture of each one.  Here we go -

With Autie April

With Autie Katrina

With Autie Lexi

With Grandma Net

With Great Grandma Marshall

With Grandpa Jimmy

With Grandma MJ (Mary)

So as you can see there was no shortage of loving for Willa over the weekend.

Willa is 11 weeks old today.  She continues to gain weight consistently at about an ounce per day.  She is now 4 pounds 9.5 ounces.  She was put back on 1/16 liter of oxygen this week and has been doing well with just that little extra to help her out.  Willa had her first hearing exam and she shows no problems with her hearing.  That was wonderful news!  She also met with a physical therapist who checked to be sure her muscles are developing as they should.  She has great strength in her neck muscles.  She is still struggling with taking her feeds from a bottle.  She is up to being able to nipple 4 times per day.  She needs to get to 8.  This is the part of the NICU stay that is agonizing.  There is nothing medically wrong with Willa and this is nothing that the doctors or nurses can give meds to fix.  It's all on Willa's time right now.  She makes the decisions right now.
I did get a phone call from the writer with the Wichita Eagle and we meet on Thursday this week to talk about Willa.  Thursday is also a big day in the NICU.  Santa is coming to visit the babies!  Santa has to come to the NICU early because he gets way to many germs on his suit Christmas Eve when he delivers presents to all the houses around the world.  Not going to lie...I'm pretty excited for Santa to come :)
Unfortunately, Santa is not going to be able to get Mitch and me what we wanted this year - Willa to come home.  Since she is still struggling with taking bottles, she will be staying in the NICU a while longer yet.  I'm still hoping to have her home before my due date - January 9th.

And in this corner...

weighing in at 4 lbs 1.9 oz, the star of "Via Christi This Week" - Willa Elizabeth Hall!  Shown here cuddling with her Daddy -

I wrote awhile back about us being interviewed and having pictures taken at the hospital.  That article was printed on Monday in the hospital's employee newsletter that is available throughout the Via Christi hospitals.  Willa was the headliner story.  We were sure to grab extra copies so if anyone wants one, be sure to ask and we can get you a copy.  The public relations department contacted me this morning and asked permission to give our contact information to the Wichita Eagle.  Apparently someone there caught wind of our little Willa fighting to come home for Christmas and may do a story on her. 

Willa reached 4 pounds on December 11th.  She was able to be moved to a big girl bed - an open crib! She has been doing very well with tolerating her new environment.  Willa is still back and forth with bottle feeds.  She is able to nipple 2-3 times per day.  Lately she has been taking all of her bottle during the night shift and then not too interested in taking even half of her bottle during the day.  She is working with a speech language pathologist to help her with her sucking technique.  I had no idea a speech language pathologist would be working with babies!  She checked Willa's jaw, tongue, and gag reflexes.  Willa has good technique when it comes to sucking.  She just needs to learn to concentrate on the task at hand and get some more endurance to finish the entire bottle. 

She had a follow up visit from the eye doctor yesterday and he discovered Willa's right eye shows that she has stage 2 level 2 ROP.  This is an eye disease that almost 80% of premature babies get.  Right now Willa will be monitored every 2 weeks to be sure the eye doesn't get worse.  She may need injections or laser eye surgery if the situation does get worse.  Willa has been on and off with her oxygen (nasal cannula).  Right now she is on a very minimal amount.  She usually needs a little oxygen during her feeds as she gets pretty worn out. 

Overall she is doing very well and continues her weight gain of about an ounce per day.

Her sign the nurses made for reaching 4 pounds!

Willa's first bath from Mom

The new crib

I want to thank eveyone for their prayers for Willa's NICU neighbor.  She is doing better than the doctors expected and is actually going to get to go home.  The mom has been there with her baby every day I have been up to see Willa.  I know they will not have an easy time taking care of her once she is home.  I now know the baby's brain is severely under developed.  I am so glad they are able to take her home and enjoy the time they have with her.

Please come home for Christmas, If not for Christmas by New Years night

Willa is 2 months old as of yesterday.  During our visit with her, we asked her nurse Meagan - one of our favorite nurses :) - when she thought Willa would be able to come home.  Meagan is optimistic that Willa may be able to come home by Christmas.  However, just a few days before that another nurse made the comment that Willa would not be home with us for Christmas.  I'm sure they don't want to get our hopes up.  But it is too late...they are already up.  Keep the prayers going that she is able to come home with us!

Many people have asked what weight she has to be before she goes home.  Weight has litle to do with when she goes home.  There is not magic number.  In order for her to come come she must do the following:

-maintain her body temperature in an open crib (Willa is still in an isolette)
-take all her feeds from a bottle (Willa is getting 1 or 2 of her 8 feeds a day from a bottle)
-go 5 days without any bradycardia or apnea
-pass the carseat test - sit in her carseat for a hour and a half without any bradycardia or apnea

Willa has been off and on with the bottle feeds.  One day she will take the whole bottle and the next, not even half.  The nurses found out she has such a strong suck she was collapsing the nipple of the bottle.  They switched her up to a higher flow nipple and she has done better with that. 

Today is day 63 of Willa's NICU stay.  She is 3 lbs 9.2 oz.  Yesterday the orders came in for Willa and she was taken off her nasal cannula.  This is a big step for her.  She did great all day being off the oxygen, even through her bottle feed.  That evening she got her first dose of her 2 month vaccinations.  The nurse said she may need her oxygen again after her shots and sure enough she did.  She got the second dose of her vaccines today and hopefully she will be feeling better by the end of the week and able to come back off the cannula.  Here are some pictures of her without cannula.  She is getting some pretty chubby cheeks!  

The classic Willa look

I ask that eveyone say an extra prayer for Willa's new NICU neighbor and her family.  The baby was born on Friday and has some medical problems.  The mom is having a very hard time dealing with it all.  I don't think she has been in to see her baby since the day she was born.  There is not much privacy in the NICU so even though I try to mind my own business, sometime you just can't help but overhear the nurses.  From what I've heard, the baby has some problems with her brain and has an abnormally large head.  It doesn't sound like there is much hope for the baby to live long.  Seeing that really makes you thankful for what you have.  It's true what they say; someone always has it worse than you.  My heart goes out to this mom.