PDA, ASD, ROP

So many acronyms!

We have been busy since our last blog post.  Willa had her 4 month check up and now weighs 8 lbs 6 oz.  It is not the greatest weight gain, but she is showing positive numbers and her muscle tone and developmental skills are improving so that is what is important. 

Willa had 2 doctor appointments in Wichita this week.  We first went to the cardiologist.  When Willa was born, she had a PDA (patent ductus arterios).  She was given 2 doses of medication in the NICU to help close it and both times it opened back up.  The medication becomes less effective after the first two doses.  Since the PDA was small, the doctor hoped it would close up on its own.  When he checked, the PDA was still there and was about the same size as when he last checked it in October.  Willa also has a ASD (atrial septal defect).  I don't remember them ever mentioning this to us in the NICU, but I think it is something she has always had.  The doctor prescribed a medication to help Willa's heart work easier.  The PDA and ASD were making her heart work much harder than normal.  Willa still may need surgery to fix these issues, but at this point we are waiting to see if her body can heal itself. 

After visiting the cardiologist, we were off to visit the eye doctor to check on her ROP (retinopothy of prematurity).  Willa's right eye was being watched closely for ROP.  The doctor thinks her eyes have corrected themselves.  This was great news!  We go back in 4 weeks just to be sure.

I have been wanting to get some pictures of Willa while she is still in the "newborn" stage.  She is growing out of her newborn clothes now!  Our friend Amy Latta came to the house and did a little mini photo session for us.  She gave us a sneak peak of one of the pictures she took.  I'm so excited to see the rest!

Willa is giving us more social smiles lately, especially early in the morning and during the midnight feedings.  She has the biggest grin and the cutest dimples!  She loves laying on her playmat and looking in the mirror at herself and hitting her little caterpillar toy and making it play music.  Two nights ago she only woke up twice during the night.  I hope she starts making this a regular occurrence!

4 months

Well I'm over a week late, but my sister was in town and we got some pictures of Willa in her month stickers.  The little doll is the same length Willa was when she was born so it is a good comparison of how "big" she is now. 

Willa went on her first outing on Superbowl Sunday.  She took a trip a few blocks away to go to Great Grandma Dolly's to celebrate her birthday.  She was very good and was awake most of the time.  That week Willa and Mom made the trip to Wichita for an eye doctor appointment to check on the progress of Willa's ROP.  I didn't expect to wait over an hour to be seen!  Willa was very good, but we were ready to get out of there so she could eat.  We then stopped by the NICU to see our friends since it was only a mile down the road :)  It was good to see them all and they took a picture of Willa so the night shift nurses could see her. 

She is starting to sleep longer stretches at night which is great for everyone!  Sometimes when I haven't had a lot of sleep I get totally confused when I wake up.  I freak out thinking Willa fell asleep on top of me and when she isn't there I am frantically looking around in the bed for her.  This is why we don't co-sleep...

We still have days where she struggles with eating.  She gets so excited to eat and takes in so much air when she is gulping that she then needs to burp, but it hurts her to burp because of her reflux.  It's an ugly cycle that once it starts, its hard to get back to where she eats well.  For the most part she is getting along well with eating.  The last time she was weighed she was up to 7 lbs 13 oz.

Here are some more pictures that I have snapped in the past few weeks.  Mitch hates bows, but I can't resist.

Settling in

We have been home for a little over a week.  We love having Willa home!

She had her first Dr appt a week ago and she weighed 7 lbs 4 oz at that appointment.  I was so relieved she is still gaining weight. 

Since we have been home, she is getting up ever 2-3 hours to eat.  We are still trying to get in a routine with days and nights.  Some nights Willa gets up every 2 hours to eat, other nights she gets up every 4 hours to eat, and then others she has no desire to sleep and all she wants to do is look around, kick and suck on her binky.  I wouldn't trade the sleepness nights for anything!

She is still on the formula to help with her reflux.  We are starting to introduce some breastmilk in with the formula and we try to nurse once a day. 

Elli is doing well with Willa.  She seems very concerned when Willa is crying. I think she is just thrilled to have someone home with her now.  Poor dog was left alone so much when we were making trips to Wichita.

We are up for having visitors and have already had some friends stop by.  We do ask that you keep the following things in consideration before you come by to visit. 

-Please do not come over if you are sick or have a cold, have recently been sick, or were around someone who was sick.  In the NICU, we had to be free of any illness symptoms for 24 hours before coming to visit.  We want to stick to this rule for awhile.

-We ask that only adults come for visits at this point.  We are in the height of flu and RSV season.  Willa is especially at risk for these things.  RSV to adults and children is just a cold, but to preemie babies can make them very sick.

-You will be asked to wash your hands before holding Willa or touching her hands.  Please don't be offended.

-Please come in clean clothes (or atleast clothes that haven't been worn around germy people).  Might sound silly, but the RSV virus can live on clothes and we just don't want to take any chances.  Also, her little lungs were very under developed when she was born and she will continue to fight that.  Clothes that smell of smoke or any other strong smells can weaken her little lungs.

-A heads up that you are coming is appreciated.  :)

Our second night rooming in.  Helping dad get some work done.

Leaving the hospital. Cue the tears after this pic was taken.

Welcome home!

Checking out her new home

Grandpa Dave holding Willa for the first time and Elli supervising

Hanging with Uncle Joe and Elli not far away

A four letter word that starts with H

We are going there....home :)

There has been quite a turn of events in the last week.  On Saturday I received a phone call from one of the nurse practitioners.  Willa's reflux was not getting much better since starting her on medication.  We made the decision to start her on a formula that is specifically made for babies with bad reflux.  I still hope to be able to get her back to strictly breast milk.  She needs a little help until she outgrows the reflux.  We decided to give the formula a few days to see if she would take more full bottles.  The most she took was 4 out of the 8.  On Tuesday, Willa didn't finish one bottle.  I sat down with our nurse that day and cried.  She recommended calling a care consult with the Dr.'s, nurse practitioners, and speech to see if we could brainstorm something new to try.  When I got to the hospital on Wednesday morning, the doctor and nurses had already discussed what to try. 

They recommended Mitch and me room in with Willa for a couple nights - provide all her care and give her some consistency.  So that is where we are.  Her feeding tube was yanked out.  Willa now decides when she wants to eat and how much she wants to eat.  Before she was forced to eat every three hours and take 58 mls.  Now she is eating every 2-3 hours and is taking anywhere from 30-47 mls per feed. 

We still need to prove tonight that Willa can still gain weight or at least not lose much.  If all goes well tonight, we will be making our journey home to Anthony tomorrow. 

This isn't how I thought we would end our NICU journey.  I always thought I would come into the NICU one day and have them tell me - "Willa has finished all her bottles today!  She can go home tomorrow!" That never happened.  Instead, it was more like - let's shove this early bird off a branch and see if she can fly.  Right now she is flying, but I think before too long she will be soaring.

Please keep us in your prayers the next few days and weeks as we make this transition.  I ask that you give us a little time before we start with visitors.  I'll post a blog entry later about the NICU recommended requirements for our visitors and when we will be ready to have people over.

Day 100

I didn't think we would reach 100 days, but it has happened.  My due date was Monday the 9th.  Willa is now term and her adjusted age is now 3 days old.  We have reached frustration level and beyond.  I think now we are at the point of just going with the flow now, which is much more relaxing.  I received a letter from my mom in the mail this week and she said "getting frustrated doesn't help anything".  That is so true so I have decided I'm not going to let myself get frustrated any longer.  I think we have now learned and conquered the virtue of patience.

Willa's eating has slowed down her journey home.  She has been improving with her nippling.  The nurse practitioner decided to back off on offering Willa a bottle at every feeding and see if she can finish some bottles.  Today she finished 3 out of the 4 bottles she was offered during the day.  This is a great improvement!  Her problem is her endurance.  A full term baby can do "suck bursts" of 20-30 sucks.  Willa's suck bursts are only about 5 or 6 sucks.  She started out with just 2 to 3 sucks per burst when she first started nippling.  So we are getting there, it is just a slow process.

Willa reached 6 pounds this week!  She is quite the little chunk.  The nurses say she looks more and more like her daddy every day.  We both agree as well.  She also looks like she just came from the barber with a fresh buzz cut.  She lost all the hair on the top of her head a few weeks ago and now it has finally grown back and it really does look like she just got a crew cut.  Its a good thing we dress her in pink or people would probably mistake her for a boy!

We have finished her nursery...all we need is a baby!

Here is her "crib" now -

And here is what her "crib" will be when she comes home -

Thinking about coming home soon -

3 months old

Day 92....Willa is up to 5 pounds 11 ounces.  I always thought we would bring home a 4 pound baby, then I thought it would be a 5 pound baby.  Now I really hope we bring home a 6 pound baby - I better not have to wait until she is 7 pounds.  I may just move into the hospital if that is the case :) 
Willa is completely off oxygen and caffeine and has been doing great without both.  Her one and only hold up to going home is eating.  Willa got her first bottle on Thanksgiving.  She started out being able to nipple (taking a bottle) one time per day.  She is now up to being able to nipple all 8 times per day.  However, she rarely finishes her bottles.  She has to take 52 ml's (just a tad shy of 2 ounces) in 30 minutes.  She is only allowed 30 minutes to take her feed because she burns more calories than she takes in if she goes longer than the 30 minutes.  What she does not take orally is then gavaged down the NG tube (tube in her nose).  Since we cannot do gavaged feeds at home, she must master taking everything orally.
Willa has a speech therapist that works with her once a day during a feeding and she is awesome.  I have learned so much about how to tell what Willa is telling me with her facial expressions, her little grunts, her eye blinks, and how her jaw feels. 
Willa has developed some pretty bad reflux which is not helping her eating.  She has figured out that if she eats, it's going to come back up later and not feel good.  So I don't blame her for not wanting to eat.  Today she was prescribed some medication to help with the reflux.  I'm praying this helps and she will feel like eating soon.
It has become harder and harder to stay away from her lately.  Between Mitch and me we are up to see her once a day now for several hours.  Willa has also had some more visitors in the last couple weeks - Uncle Joe and Great Grandma Dolly both got to hold Willa for the first time.

Willa and her favorite (and only) uncle

who got her a BB gun for Christmas

proud Great Grandma Dolly

3 month old little miss Willa

Thanks cousin Macy for the outfit!



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!