11 months and road trip

11 months!  I can't believe its been 11 months since Willa was born.  This year has flown by.  So much that I haven't updated my blog in a loooong time.  Oops!  Time really got away from me.  Willa has been keeping us busy.  She started daycare just a few weeks ago.  Grandma Mary went back to teaching at the school so this was the first time Willa was watched by someone other than family. So far she is doing great!  She learned to crawl just last week.  Baby proof the house stat!  Got it done just in time.  She of course won't come crawl to mom or dad....oh no...she wants to climb on the dog, chew on the dog toy, chew on shoe strings or chew on flip flops.  Oh boy! 

We are nearing the one year anniversary of when we found out we lost William.  It will be a hard day to remember.  Still not a day goes by when I don't think of him. 

Today we are in Kansas City preparing for Willa's heart cath in the morning.  We arrived today and went to have her go through pre-admission testing.  It was a long day of driving, meeting with doctors and getting settled in our hotel room.  Willa goes in for her surgery at 8 am tomorrow.  The nurses said we will probably be away from her for about 4 hours.  They will put a coil in her heart to close the valve that never closed when she was born.  They will also do some assessments to see how the hole in her heart is affecting the pressure in her heart.  At this point, they don't think they will fix the hole, just the valve.  Usually with a heart cath, the patient can go home the same day.  With the doctors putting in that coil, she will have to spend the night just to be sure nothing shifts.  I know we are in very good hands there.

Some good medical news for Willa - her ROP is gone!  She has been cleared and we just have to follow up once a year at the eye doctor.  She is still at a higher risk of being near sighted.

She was measured and weighed today.  She is 25 inches long and weighs 14 lbs 11 oz!  She is over double the length she was when she was born.  Here is our big girl yesterday taking her 11 month picture!

Life & Willa Changes

I know, I know...I have been so bad about giving an update lately.  Life got extreemely busy after I went back to work and I would rather spend time with Willa when she is awake and then I have so much stuff to get done when she is asleep!  This weekend we are visiting my family in Tipton so I can't use laundry or cleaning house as an excuse not to sit down and update the blog.  So much has been going on since my last update...

Life changes
Mitch did a great job during his 4 weeks of paternity leave.  I think all Dads should take the time to have paternity leave (if they are able).  He really enjoyed spending the time with Willa and really learned how much you can't get done with a newborn :) 

Mitch went back to work and turned in his resignation at the bank.  This is something we had been discussing for awhile and we both decided it was time to make a change with his career. And to squash the rumors that may be going around (gotta love small town gossip)...no, we are not moving, no, we are not getting divorced, no, he did not get fired.  In fact they tried to convince him to stay and the two of us are as happy together as we have ever been.

So what is he going to do now?  No, he's not going to be a stay at home dad :) Although that may have to happen if we don't find daycare soon.  Mitch, his brother and two others are starting up a water well drilling business.  Mitch worked for a guy during his summers in college drilling water wells and has had an interest in this since.  They will begin drilling wells June 1st.  The same 4 guys are taking over ownership and management of the tire and service station in town.  They also purchased the old library and are renovating it to rent out for office space.  So needless to say Mitch is staying busy.  He and his brother have increased their cow herd on top of all of this.  Thankfully the cows are now out to grass so they require much less time these days.

More importantly Willa changes :)
Now on to more important things - Willa! After Mitch's paternity leave was up, Willa began going over to Mitch's parents house for the day.  His Mom took a leave of absence as a para at the junior high school to take care of Willa.  They have so much fun together and Willa is a big fan of John Denver's song - Grandma's Feather Bed :) 

Will is now rolling over - tummy to back and back to tummy.  She loves to stand up and really wants to sit up but just doesn't have the strenth or stability yet.  She is grabbing at anything she can get her hands on and putting it in her mouth. She has the cutest laugh ever.  I got her giggling at me sneezing one day so now when I pretend to sneeze she cracks up.  I caught it on video one day.  Willa Laughing  She is also eating like a little piggy these days.  Its funny to think back at the time when we were hoping she would take 2 ounces in 30 minutes.  Now she will down 4 ounces and get a burp out in 15 minutes.  We haven't started on rice cereal or purees yet, but I think she is about ready.  Her last check up she was weighing in at 11 lbs 2 oz. 

This girl loves to sleep!  I think we may have the best baby ever!  She has been sleeping through the night for a few weeks now.  Mitch and I went out by ourselves to celebrate our 5 year anniversary.  We stayed out pretty late but Willa was sooo good.  She slept until about 7 and then we took her in to our room and the 3 of us slept until 11.  It was awesome!

Her last checkup with the eye doctor went well.  They still see a little ROP but they think it is going to clear up on its own.  We go back again in August and hopefully that will be the last time.  The cardiologist sent sonogram pictures of Willa's heart to the surgeons in Kansas City.  Her PDA (the valve that never closed after she was born) is still open.  Right now it is not causing any problems but as she gets older it can cause problems.  The surgeons want to wait until she is just a little bigger before they schedule anything.  The surgery will be done in Kansas City and they plan to be able to go in and fix the valve by doing a heart cath through the artery in her groin.  We go to the cardiologist again in June and I'm sure we will find out more then.

It is hard to believe she will be 8 months in a week.  Here are her 6 and 7 month pictures. 

6 months (still can't capture smiles with my camera!)

7 months (and again no smiles for mom)

What did you say???

Little smile...finally caught it!

hi ho hi ho...back to work I go

I've been slacking at posting an update so this will be a long one.  Tomorrow I go back to work and I probably won't have time to post an update for awhile again.  I get back just in time for the last four weeks of tax season...should have planned that better :/ Mitch starts his 4 weeks of paternity leave.  After that, Mitch's mom will watch Willa until the end of August.  We will try to get her in to daycare at that point.  We would love to get her in with someone with just a few kids.  She is still at risk of being sick even as she gets bigger and stronger.  And if she does get sick she will likely get it worse than another child who was born full term. 

Well, lets see what has been going on lately.  Since the weather has been so nice lately, we have been taking daily walks.  Willa does pretty good and usually falls asleep on our walks.  i have been very pleasantly surprised at how well our dog walks with us.  When I would run with her she would pull me all over the place.  I think she is scared of the stroller so she just hangs pretty close to me when we walk. 

Willa has found her thumb and I'm starting to wonder if she is going to be left handed.  She seems to prefer her left thumb and uses her left hand more often when playing with her toys. 

She is definitely a morning person.  She loves to get up and play on her play mat and talk to her toys.  She has a little caterpillar that she hits to get it to sing music and a lady bug that hangs over her head.  She will just laugh and coo at the two of those things for quite awhile in the mornings.

She hasn't rolled over yet and isn't much of a fan of tummy time.  She is can hold her head up by herself most of the time and will roll on to her side now.

We started using our cloth diapers last week and that has been going well.  We only have about 12 and that will get us through a day and a half or 2 days at most.  We still have to use disposables some but at $0.20 a diaper or more I think it will be worth it to use the cloth diapers as much as we can.  The cloth diapers are so easy.  That may change once she is off breast milk, but for now all I have to do is stick them in the washing machine and it gets them perfectly clean.

The last time we had her weighed was a couple weeks ago and she was 8 lbs 11 oz.  So I am assuming she is over 9 lbs now.  She goes back to get her last RSV shot this week and to get her eyes checked again.  After this last RSV shot, I think we will be more comfortable taking her places such as church and running errands.  Up until now she has just been to the Dr and to see Grandmas and Grandpas.

I haven't been good at taking pictures other than her monthly pictures so I don't have many new ones to share.  Here is one of Willa and one of our neighbors.  They were born only a few days apart and will be classmates someday.

I missed posting for her 5 month picture on March 4th so here it is -

And to show you she already has an attitude -

I've wanted to do a collage for awhile to see how far Willa has come.  I wish I would have better pictures from the beginning, but didn't think about that at the time.



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!