Grandma Green is Coming to Town!

My mom's flight arrives this evening. Very excited to have my mom here to help out. I have not yet started decorating for Christmas. I also have some unfinished projects which I hoped to accomplish prior to the birth of our Bean.  This will also be my mom's longest visit to North Carolina since I moved here 10 years ago.

Yesterday was a four poop day for Willa. I hope she saves up some of this diaper excitement for Grandma!

Sleep Patterns

Willa seems to have her days and nights flipped. Often she does not want to go down to sleep after the 8pm feeding and will be awake after the 11pm feeding. This is a problem because Daren and I try to go to bed right after the 8pm feeding/pumping session. We are taking turns staying up with Willa on the nights she is fighting sleep.  Daren will also step in and give Willa a bottle so I can get to bed quicker by not having to feed her. This is a huge help. I'm working on trying to keep Willa awake more during the day in the hopes of her sleeping at night. Fingers crossed it goes better tonight than it did last night.

Yesterday was our third home health visit. Willa weighed in at 6 pounds and 1 oz. Willa weighs more than our Thanksgiving turkey! Very exciting. Look at the difference in her legs from birth to this evening. My girl is getting some chub! Love it.

The omphalocele is doing great. The skin growth is happening so quickly. As Willa grows it makes it seem like the om is shrinking. Our second appointment with the surgeon is on December 13th. I'm excited to hear about her progress.

One month later...

A message from Willa:

Saturday marked my one month birthday. It was very exciting. By that, I mean it was the same as every other day, except for a couple of extras. First, mommy decided to take a picture of me beside some block with a "1" on it. I wasn't very happy that this picture interrupted my nap.

I decided that mommy was determined and was going to keep trying until I stopped crying, so I eventually stopped... under protest. This was the best I was going to do for her for now - she'll have to take it or leave it. I just wanted to get back to my nap. This picture stuff was making me tired and I had a very busy day scheduled.

Happy Thanksgiving!

Bye Bye Turtle Power

Monday was an eventful day. In the morning we had our second visit by Home Health. We had a big jump in weight from the previous Monday. Willa went from 5lb 6oz to 5lb 13oz.  The nurse also said Willa sounded fine after giving a listen with the stethoscope. I was worried her breathing had gotten a bit congested sounding.

We also got a call that Willa's new brace was ready. I'm very thankful for how close we are to UNC hospital.  It only takes us about 20 minutes to get to UNC. I can't imagine the travel worries and costs for families who live hours away.

The new brace is much more streamlined in the front and is connected to a back support as well.  We have lost the turtle shell look. For me, the front portion reminds me of a top hat.

Here are some pics of Daren and the two workers from prosthetics trying to wrestle Willa while working on the fit of the new brace. Some toot sweet would have come in handy.

The final fitting of the brace took a few tries. Willa needed to be consoled while the prosthetics folks were adjusting the device. Remember, this child does not like to have onsie off and be naked. She wants to be covered at all times. Swaddling is a must.

We are getting used to the new brace. Willa is not nearly as cuddly as she was with the turtle shell. The rigid back and side braces are a bit awkward. I don't think she notices the difference. I took some pics of the brace as we were getting ready for bath time. Again, the screaming child in the background of the pics doesn't like to be naked. 

Also snapped a reverse view of the omphalocele. The dark part is the umbilical cord.

Bottom up view

Productive Saturday & Unproductive Sunday

One day was spent cleaning and preparing for my mom's upcoming visit and the other day was spent on the couch. Just some pics as we went through our day.

Downstairs changing station.

We know...bad for our backs.

Princess is sleeping while we clean.

Dad tried to get a picture of Willa smiling in her sleep.

 

Blurry pic of Om - Day 15

Sunday = quality couch time

Surgeon Visit and Elvis Sighting

This morning was our first appointment with Dr Adamson from pediatric surgery since we have all been home from the hospital.  Dr A asked how things were going at home and we said great. We are totally comfortable doing the dressing change.  We also said she is doing amazing with her feedings.

Dr A and his nurse practitioner unwrapped and took a look at the omphalocele. He was very happy with the progress of the skin growth. Also, the discoloration of the remaining membrane is perfectly fine. Willa was amazing while Dr A was pressing along the outside of the om checking for the abdominal wall development. I did question what that downward pressure on the om was doing to her breathing ability and he said it would make it more difficult.

If there were reason to, the abdominal wall is strong enough to handle a surgical repair of the om.  However, there is no reason to rush things and we will continue to allow Willa grow bigger and stronger. Dr A didn't exactly give us a timeline for the surgery. All he said was we could wait up to a a year...but we won't.  I know you all wanted a definite time for the repair but we all just need to be patient.

Dr A does not think the current turtle shell prosthetic will be what we use to start squeezing the organs back inside. Instead, he wants something smaller and more cupped around the om. Our next stop after meeting with Dr A was go meet with the folks at prosthetics.  We will continue to meet with Dr A on a regular basis.

The guy from prosthetics took lots of measurements of the wrapped om. This time Willa made her displeasure known. She was crying the entire time. The new device will be ready the first part of next week and will have a front and back support.  Not sure if we will still have a turtle or another animal to describe everything.

We wanted to make a quick stop at the NICU before heading home. Easier said than done when the Children's Miracle Network Telethon is happening. Even Elvis was at the hospital trying to raise money. Oh, and it isn't a smart thing to walk through a hospital with newborn. People were coming up trying to get a closer look. Daren and I had to do some germ dodging. We finally made it to the NICU and left them cupcakes, turtle brownies, and scotcharoos.  I had to give the folks at the NICU a sugar rush so they can last until their shift ends at 730pm.

I know I was tuckered out after the excitement of the hospital. Willa and I took a nice long nap on the couch. Not sure if Daren was snoozing as well when he wasn't snapping pictures of us.

Goodies for the Nurses at UNC

Gaining Weight!!!

Right now the goal for our little Bean is to gain weight.  We are feeding her as much as she can take. We always try to give her a bottle after she breastfeeds.  When we are only bottle feeding her we try and always get her to eat a few more milliliters than before.  I think the record feed is 70 ml which is just over two ounces.

Downstairs pumping station.

Tuesday was our first visit from Home Health.  UNC Hospital set us up for four visits happening once a week. The visits will provide us with the items needed for wrapping the omphalocele. Our cost for the visit will be much less than what it would cost for us to buy the large gauze roll (wrapping the om), small gauze rolls (support the om on the side), tape (securing the gauze), and the 2x2 square (protects the gauze as a pee blocker when changing her diaper).

This morning we had our first visit with our pediatrician. Thankfully, because Willa is gaining weight we won't have to go back until month two. I think between the three remaining Home Health visits and our weekly visit with the surgeons that waiting until two months for a second peds visit will be just fine. Our doctor said that as soon as Willa is at or above her birth weight we can let her go longer than four hours between feedings. I did have to wake her this morning for her 730am feeding b/c she was still snoozing away.

No big plans for the day. I'm sure Willa will demand to be held between her feedings. Right now Daren is having some cuddle time while watching soccer. I want to put on my Betty Crocker apron and make some goodies for all the wonderful folks who cared for Willa while she was in the NICU. We will drop off the caloric goodness in the morning when we head back to the hospital for our first appointment with the surgeons.

Willa loves to snuggle.

Deep sleep.

Not Much Action - Mostly Pictures

We are just content hanging out with Miss Willa. We did go for a spin with the new stroller on Sunday and today.  I was surprised at how tired I got from pushing the stroller. Sometimes I forget I just had a c-section. 

This is a picture from Sunday afternoon when Daren was trying to keep Willa awake during the day so she would sleep at night. I can't say I hear her much at night except for when she is awake every three hours to eat. Now, she does stay awake after her 530am feeding.  The last two mornings I thought she was fast asleep in the bassinet, but when I get done with my shower I find Daren rocking Willa in the nursery.  I'm not sure Daren will be so happy to rock Willa once he starts going back to work. 

Tummy time is a bit different due to the omphalocele and the turtle shell. Instead of trying to come up with a way to do tummy time on the ground we are holding Willa upright. I must have tuckered her out b/c it wasn't long into our training session when she fell asleep on my chest.

Today's 11am feeding was moved to a different location. We enjoyed the screen porch and the 70 degree weather before the huge drop to 40 degrees on Tuesday.

Another picture of the om.  I'm amazed at how fast the skin is growing.

Letter From Cousin Callie

Baby,

I want you to be a girl. I love you. You are the best baby in the whole wide world.  I want to hold you real bad and dress you. I want to show you my room.  I want to tell you Aunt Shelly & Uncle Daren are the best aunt & uncle.  I can't wait till you are born so I can walk you in a stroller.  I wish you were better.  I want to be the bestest cousin for you.

I love you.

Callie

Lazy Days at Home

Willa spent most of Saturday napping on and off throughout the day. The only thing on the schedule was a trip to Chapel Hill Pediatrics for our initial appointment after discharge. Nothing much happened at the appointment.  We spent most of the time going over everything we learned at the hospital and what the future plans are for the repair of the omphalocele. It will be more difficult to get an accurate weight of Willa outside of the hospital because of the dressing on the om. The one thing we can do is try to make it as consistent as possible with each doctor visit - turtle shell off, dressing on and diaper on.

After the appointment we made a quick trip to Buy Buy Baby to purchase a few more items off our registry. The weather is back in the mid-70's and we want to take a spin around the neighborhood with the stroller. It is time to get Willa used to sunlight after being in the NICU for two weeks and mom wants to get some exercise.

The never ending laundry has started. We went through a few outfits and blankets on Saturday.  Newborn poop has some amazing distance ability.  Daren seems to think I bring out this Olympic level pooping. I'm sure my older sister would agree since she has made the same comment for as long as I can remember. I think the outfit in the video posted below lasted about three hours before we had a mishap. Also, we can only dress her in onsies that are all buttons or zippers. Anything that has to go over her head doesn't work.

Daren shot a quick video of Willa sleeping in the pack-n-play. Not much excitement but I'm sure the Grandmas will enjoy. You can hear the classical music in the background. As much as Daren pushes the classical I will push Dave Matthews.

Willa Rules the House

First car ride.

We didn't have a set time for Willa's discharge. All we knew was that it would be at some point after morning rounds. Also, Dr Bose and the rest of the staff wanted to make sure we thought Willa was ready to come home. I felt much more comfortable with this discharge attempt than the one from last week Sunday. With last week I didn't think Willa was eating well enough to leave the hospital.  My only concern with yesterday's discharge was the fact Willa lost weight over the last three days.  Dr Bose assured me that Willa will thrive at home and will eat better at home than she does at the hospital.

We were discharged from the hospital on Friday around 4pm or so.  This was a bit later than we anticipated but the late discharge wasn't a big deal because were still able to make it home in time for the UNC M Soccer game v. Virginia in the ACC quarterfinals. Oh, and the team won on penalty kicks!

Naping during the soccer game.

Om - Day 14

We did the omphalocele dressing change at 8pm.  We are thinking this will be our standard time.  This was the first time we changed the dressing with just us.  We didn't have a nurse there help us by sedating our daughter with toot sweet.  Only two small snags, we didn't have scissors to cut away the extra gauze and we forgot to "back swaddle" her arms. I took a picture of the om.  You can see at the base of the om how the skin is starting is starting to grow higher and higher.

I just asked Daren how to describe our first night at home - it was noisy. I thought it was just fine. We were told that if Willa doesn't wake up every four hours to eat that we are to wake her.  Well, that was not needed. She woke us up about every three hours which is the same schedule she was on in the NICU.  We did have to supplement with a bottle after she became disinterested in breastfeeding.  I also tested out the nursery chair and I think it will work perfectly.  Instead of saying I slept well at night...I will say I had a lot of short naps.

             

No Germs Allowed

Willa should be released in just a few hours. We are just hanging out and waiting for the doctors to do their final rounds and the nurse practitioner to complete the discharge orders.

All of the nurses wanted to make sure we understood the danger of RSV and how important it is we try to limit Willa's exposure to others for at least six weeks. What can seem like just a sniffle to a child or an adult can be deadly to a baby.  We are going to follow the same visitation rules as what they have here in the NICU -

No children under the age of 13 can come in the house
We welcome people to come and visit us - but we do ask you've had your flu shot.
Even though you won't be able to go near Willa we will ask that you wash your hands.

Thursday - She Pooped on Me

Today was my first time driving since the hospital staff kidnapped me on Friday, October 26th.  I had to drive versus getting picked up by a co-worker because I needed to get the car seat base installed. It was nice having control of the radio stations in my own vehicle. Also, Daren's driving doesn't help my gas milage.

Once again our little night owl was up most of the early morning hours and tuckered out when I showed up a little before 8am.  We ended up delaying care time and shifting back the feeding schedule just to try and get her to wake back up. The exciting diaper change happened around 9am. She sounded the warning toot but I thought I was safe to proceed. Each time I tried to open up the diaper and get back to work...pffffttttttt followed. This happened three times and the girl did not stir. Nothing was interrupting her sleep. Again, thinking she was done I tried to proceed and that is when I got shot in the thumb. I don't like this child's games. 

After morning care time I started to take some more hat pictures. I gotta keep up because I still have three more hats at home! Got a delayed Halloween pic and I also sent a picture to my Track coaches to wish them luck before NCAA Regionals. 

This afternoon I got the car seat installed. This service is provided free at some of Chapel Hill fire stations. The fire chief told me that when people other than a trained professional preform the install that they find 80% of the installs have at least one major flaw. That is frightening.

Daren made it to the hospital for the 3pm and 6pm care times. He handled feeding her a bottle at 3pm since I was delayed. I did make it for the dressing change and weigh in at 5pm. I'm  happy to report our little Bean gained some weight. The doctors are confident she will gain more weight and thrive at home. What I'm not happy to report is I nearly got pooped on again. Daren started taking off her diaper and meanwhile I started setting up for the dressing change. I was standing at the foot of the crib and stopped my duties to assist with putting on the butt cream. I had just finished telling Daren about how our nurse said we needed to apply butt cream like we apply frosting to a cake. Make it a nice thick layer when I realized I was in "firing range." No sooner had those words come out of my mouth did Willa take aim. It was like a I was in a slow motion movie. I made some sort of sound and jumped back at the same time. Luckily, there was a comforter over the crib and it took the direct hit. My UNC Tennis shirt was safe. This darn kid!

Tonight is a busy night at home. We are prepping for the arrival of our little girl. Unless something drastic happens overnight, Willa will be discharged tomorrow.  Very exciting!!

Wednesday - Eyes Wide Open

I'm finally back on track and blogging about the day as it happens. 

I started the day as a solo parent because Daren went back to work.  Thankfully, I have co-workers who will live close by who will take me to the hospital in the morning. I'm pretty sure Daren will give a ride home when he gets here after work.

The feeding plan has been changed once again. If Willa doesn't breastfeed for 15 minutes we are supposed to give her a 25 ml bottle. The ng feeding tube has been taken out. I love the fact I can now take pictures of Willa without anything on her face. We still don't have a clear plan of what is happening with surgeons. I didn't see them today and yesterday's brief visit Daren had with Dr Adamson was uneventful. I don't know when they are going to start tightening the velcro around the turtle shell.  I definitely can't say how long the process will take. I already know the answer if I ask the question - it is different in each situation.

Just hanging in my crib.

Rounds took place just as I was finishing up pumping after the 11am feeding. Our nurse was just finishing up giving Willa her bottle.  I was shocked that Willa stayed awake during the entire time I was talking with the doctors. During the day our little Bean is always sleeping if she isn't eating. Well, she stayed awake for about 90 minutes. She wasn't fussy. She just sat in her crib and played with her tongue and grunted a good bit. So content. I hope this temperament continues once she comes home.

My new strawberry hat!

I told Daren that we need to have everything ready for the next baby by the 36th week. I'm not going through this scramble again. I know I promised pictures of the nursery at least one month ago. We are making progress on hanging the decal. We've at least decided which walls to use.

Tuesday - Dr Bose v. Car Seat Test

Tuesday was a battle of the wills. Was Dr Bose going to win out and say Willa passed the car seat test? Or was he going to be held to the standards set in the books. Well, it was a little of both. During rounds Dr Bose asked how far away we live. It takes us about 20 minutes to get home. Dr Bose said perfect! Willa can make it for 30 minutes in the car seat and that means you have a 10 minute cushion.

Level heads prevailed and we were going to repeat the car seat test after the 2pm care time. We also talked about the possibility of Willa going home using a car bed. I said we plan on getting the seat base installed in my car and use Daren's car if we end up using the bed.  All we want is for our daughter to get home safely.

Willa came close to passing but had some dropping of rates on the monitors at about the 40 minute mark. We will just have to wait and see about what the future holds as far as transportation.

Willa appears to have her days and nights turned around. We are getting a consistent report of her taking full feeds by bottle from 8pm - 5am.  She is was also awake from 2am - 5am just looking around the room.  We hardly get to see her eyes during the day. I hope we can get these times flipped while we are still in the NICU.

The amount of time spent breastfeeding is increasing. We hit a record of 13 minutes at the 11am feeding. If Willa feeds for 15 minutes they will not give her a bottle. Willa also drinks VERY loudly. The other nurses were wondering who was making the loud sucking noise. I said it was just my little turtle.

Dad is learning how to multitask. 

Daren left for work just before the 11am care time. I think he left b/c he knew Willa had a poopy diaper. I won't forget that. The plan was Daren would work until the early afternoon before heading back to Chapel Hill to join me for the UNC M Soccer quarterfinal game v. dook. We sent a picture to the coaches to let them know Willa would be cheering for them.

Go Heels!

I think I enjoyed being outside in the fresh air as much as I enjoyed being at the game. If only the game was during the day so I could be in natural light. They keep it very dim in the NICU. I'm going to have to get Willa some shades for the house. My guys won the game 1-0.  They made it a little too close for comfort. Next they are off to Maryland for the semi's. I'll have to follow them via the computer.

Willa for president.

Today was my planned date for the c-section. I guess Willa just didn't want to wait around and be a November baby. I'm not big into politics but I thought it was funny she was going to be born on election Tuesday. I'm ready for all the political news to be over with. We did have a little political race happening in pod B. Willa ran for the president of pod B. Her platform was breastfeeding, poopy diapers, and naps for everyone. She is sporting a lovely hat made by neighbor Paige.