Two months!

Merry Christmas from me, Willa!

Mom and grandma have been arguing on when I turn 2 months old, so I'll pick a day in the middle. Mom thought it was Saturday since that was 8 weeks from the day I was born, but grandma said I'm not 2 months old until the 27th. I think I should just celebrate the whole time.

Speaking of celebrations, I had a very nice Christmas. We have been listening to lots of Christmas music. I got to video chat with grandma and aunt and cousins in PA, and then again with grandma and aunts and uncles and cousins and great grandpa in IA. I was very busy. I got several nice outfits, some new animals and a bunch of books that I am very excited for mom and dad to read to me.

Tomorrow it's back to reality. We have an appointment at 2pm for them to check out my turtle shell and see if any adjustments are needed. I will probably try to work in a nap on mommy's chest after that. It's hard work being me.

Chunky Monkey

We did an unofficial weigh in at the house this morning. As a reminder, Willa is not gaining weight fast enough per the doctors and we are adding formula to her bottles. Last Thursday, Willa weighed 6 pounds 7 ounces. This morning, using our bathroom scale, we have Willa tipping the scales at 7 pounds. BAM!

To celebrate the weight gain we dressed our little Bean in a bit too big monkey onsie. I love the butt ruffles.

No Longer Under House Arrest

Since Willa has passed the six week mark she is getting out and about more and more. Shopping with my mom was mundane b/c we pretty much kept Willa in the stroller underneath her cover. Last week Thursday, after her doctors visits, we made a trip to the UNC Track & Field office to thank all of the coaches for their wonderful gifts. This doesn't sound like much to most of you...but this is a big deal when Daren Streett is your father. He is one protective guy. The folks at the T&F office aren't strangers and that means they want to get up close with your little girl. Willa didn't seem all that excited b/c she pretty much slept during the entire office visit and lunch.

Saturday night we met some friends for dinner at the neighborhood mexican restaurant. I had my first margarita since finding out I was pregnant. I thought it was pretty weak and downed it fairly quickly. Well, I felt the effects not long after. Again, Willa was a champ and just snoozed in her car seat.

We still want people to wash their hands before holding her and keep their distance if they are feeling sick. Willa will be getting her two month shots the first week of January.

My ducky onsie.

My snowman onsie.

Including some pictures of Willa in some of her new onsies. Gotta give you all a reason to keep coming back - 

Date With a Surgeon

This morning we had our second post-NICU appointment with Dr Adamson. Daren and I went into the appointment with lots of questions. The million dollar question - when are you going to try and do surgery????

Prior to seeing Dr A, Willa had to be weighed and measured for length. Willa gained a few ounces from last week Monday. She is up to 6 pounds and 7 ounces.  Her length is still just shy of 19 inches.

Visits to Dr A means being almost naked for Willa. This is the one chance the omphalocele has to breathe. Daren and I have our dressing changing sessions down to less than two minutes. This morning,  clad only in a droopy diaper, Willa got to squirm around for about 10 minutes. She was a happy little girl. Dr A is very pleased with the looks of the om. He even mentioned letting it get some air once a week would be good for it.  I was shocked when Dr A started compressing portions of the om back into the abdominal cavity. It didn't phase Willa a bit. Dr A said he didn't feel the liver with in the om and believes most if not all of it has gone back inside.

Our questions...

#1 What is the timetable for the surgery?

Although there is still no definite time scheduled for the surgery, Dr A was very pleased with the progress and shrinkage of the om. While not willing to commit to a date, he was optimistic that it would be on the near end of the 6-12 month window, maybe even a little before it. It could be as early as 4 months if the om continues to retreat inside as well as it has so far.

#2 What is Willa's recovery time post surgery?

We were originally thinking that the recovery time for Willa would be around a month, as a result of some information in the abdominal defect DVD that we previewed for UNC. While this is generally true for an om of this size, if the om continues to shrink at its current rate (see #1), there won't be much "extra" work to do to repair it. Additionally, since it will have mostly migrated inside on its own, the lungs won't be as disturbed as if the repair had to push organs back inside, which could squeeze the lungs and impact breathing. Willa's recovery time would likely be more on the order of a week or two.

#3 Do the organs just "fall into place"?

A friend asked, "After surgery, will the appendix be where the appendix is supposed to be?" The quick answer to this is, mostly. It seems that the liver really doesn't care where it lives. Likewise, the intestines can float around to some degree. The appendix could be on the right side instead of the left side. Generally, all of this is ok. As Dr A mentioned, it might be worth noting where things end up in case there are ever any issues (not even necessarily related) in the future and people go looking for things in normal places. One of the few potential problematic scenarios would be a twisting of the intestines as things fall back into place, but that is more likely for a gastroschisis than om.

#4 Will you use a natural or artificial mesh to close?

If the mesh were non-natural, or not of a type of material that would be absorbed by Willa's tissue, there would need to be a second surgery to remove that mesh. Even in the event of a natural mesh, there would likely be a hernia that would need to be repaired.

However, much to our pleasant surprise, Dr A is currently planning to let things continue to progress with the om retreat in the hope that no mesh at all will be required. By waiting for things to settle inside over time and stretch out the area required to contain them in the process, the plan would be to simply use existing muscle and tissue to close her up. That would mean no second surgery at all!

After our Q&A session, Dr A mentioned some slight concern with Willa's slow weight gain. She should be gaining 1/2 ounce to 1 ounce a day. After a visit from a nutritionist, we'll add a bit of formula to the breast milk when bottle feeding. That will take Willa's calorie intake from 20 calories per ounce for plain breast milk up to 24 calories per ounce.

The day ended at the prosthetics and orthopedics end of the hospital. Some additional padding needed to be added to the shell to account for the smaller size of the om. The adjustment was quickly made and Willa was strapped back in to her new and improved device!

Family Picture Preview

On Thursday we took family pictures/newborn pictures at the house. Our friend Brooke is the brave soul who tried to make this family look good.  Brooke was also one of our wedding photographers so she knows how much I enjoy taking pictures. I'm very happy we were able to schedule this during my mom's visit. I know she enjoyed watching all of the hoopla.

Trying to get Willa to look at the camera.

I just had to snap some quick pics of everyone focused on Willa and trying to get her to play along.  Of course, when we wanted her to be asleep she was wide awake.

Peanut gallery.

Mom and I did a little mock photo shoot prior to her flight home on Saturday. I think the better pics are on my mom's camera...but I still need to share the shot I got. Unfortunately, Willa was not yet fully awake when I was taking the pictures. I think I had a happy and wide awake baby just after I took this picture. 

Crafty Friends

I am not Martha Stewart. The last time I sewed anything was in high school home ec class when I made a laundry bag. However, I have some very talented friends.

I posted all of the pictures from the NICU of Willa's hats made by my neighbor Paige.

Another friend made us three changing pads. They are great. Willa has pooped and peed on all of them. I just flip them over to the clean side and don't worry about washing them until both sides are soiled.


My mom brought us a car seat cover made by a friend from back home. I will say when the friend texted us and asked for a picture of our car seat handle I was a bit confused. Her gift is so simple but so genius and I haven't seen one in any of the baby stores around here. Also, the car seat cover is great for keeping people from stopping us and wanting to see Willa. Small babies sure attract attention.

All of this is on top of the many beautiful blankets we have received - Quilted and crocheted...if that is the correct wording. Willa is loved.

Ladies, I think you could sell these on Etsy and city slicker women like myself will be your biggest customers. I already have buyers lined up for all of you. I won't even take a commission.

Car Seats and Strollers For Dummies

Sometimes you just have a brain fart.

Willa had two doctors appointments at UNC Hospital on Monday morning (previously blogged). Mom and I get everything all packed up for the morning of appointments and an afternoon of shopping. The last thing we need to do is get the stroller in the car. We couldn't figure out how to get the car seat adapter off of the stroller. We tugged and pushed every button we saw but nothing worked. We were running short on time so we left the stroller behind and decided we would be lugging the car seat from place to place.

We got to Chapel Hill and I found the Ambulatory Care Center no problem. I only had to pull one u-turn (if you know me this is impressive). Now it was time to struggle with the car seat. We couldn't get the darn thing unhooked from the base. I tried. Mom tried. We tried together. Again, we started to run short on time so mom said forget about the seat and just carry her. UGH! I did spot the car seat manual on the floor and snagged it so we would be able to look up the answer while waiting to be called back to the room.

That evening Daren showed us how to release the adapter. We were so close! The car seat manual showed us that we both were a bunch of idiots. My older sister texted me this response - "Mom is challenged when it comes to car seats by the way. Not your best choice of baby aide!"

Tuesday was the shopping trip to meet our friend at Buy Buy Baby (previously blogged). I collapsed the stroller and stuck it in the back of the car. Plopped Willa in her base and off we went. We got to BBB and went to assemble our car seat/stroller combo. We couldn't unfold the dang stroller. We yanked and pulled as much as I dared before thinking we were going to break the stroller. Completely defeated, I started to carry the stroller into BBB so they could show us how it works. Luckily, the friend we were meeting showed us the error of our ways.

I think my mom and I have finally passed the test of car seats and strollers for dummies. I'm scared when Willa will upgrade to a different stroller and larger car seat. I might again have issues.

Babies R Us v. Buy Buy Baby

Mom, Willa, and I buzzed over to Babies R Us after finishing up with the doctors appointments in Chapel Hill.  We were on a mission to find something for Willa to wear for Christmas/family pictures.  Prior to going in BRU I let mom know that our friend Sally described BRU as Wal-Mart and Buy Buy Baby as Target. Reviews of BRU's return policy, store selection, and customer service were a few of the reasons Daren and I decided to have one of our registry locations be at BBB instead of BRU. It didn't take long for my mom to dislike BRU.  The woman at customer service did not impress. The store managers did not have her stationed in the place where she would best assist customers. I'll be nice and not say where I would have had her working if I was the manager of the BRU.

Anyway, we needed clothing options for Willa so we could find something to coordinate with what Daren and I were going to be wearing in the pictures. We didn't find anything we particularly liked with a Christmas theme so instead settled on three different outfits.  Willa is difficult to shop for because of the omphalocele. Two piece items don't work with the prosthetic.  A onsie wasn't going to be a super cute thing for a Christmas card. I'm sure you all are realizing our dilemma.

My mom's first trip to BBB was on Tuesday after the visit from the Home Health nurse. Oh, only a slight weight gain this week. Willa is up to 6 pounds 3 ounces from 6 pounds 1 ounce the previous week. My mom fell in love with BBB the minute we walked in the door. I brought an item to return and the older gentleman at customer service was making jokes and was happy to help us. Mom found a toy she wanted to give my youngest niece but was in a quandary about how to get it home. The wooden toy was too big and bulky to fly with and would cost a bundle to ship. Mom explained her situation to an employee and she came through like a champ. She was going to wave the shipping fee. Apparently, my mother hugged her she was so happy.

I think my mom would be a very good customer of BBB if they opened a location in Sioux Falls, SD.

Double Doctor Day

Sorry, I got behind with blogging. Life has not been relaxing with my mom in town. We are always on the go.

Monday morning we had two doctor appointments at UNC.  The first visit was with orthopedics to look at Willa's left foot. To refresh, Willa's left foot is turned outward which is called valgus.  The doctor isn't overly concerned but did give us stretching exercises. We are to go back in two months to see if we have made progress at home. If not, they will look to do a cast/brace to correct the issue.

The second appointment was with prosthetics and orthotics to check the fit of Willa's new prosthetic device for the omphalocele. There must have been some notes made about how Willa expressed her displeasure during the last visit. The temperature in the exam room was a good bit higher and the tech knew that it worked to wrap Willa in a blanket when she needed soothing. The tech took some pictures and measurements of the omphalocele. These were compared to the images from our first visit on November 19th. The omphalocele is shrinking - as in the organs are slowing starting to go back inside. My mother wasn't seeing things. I guess I don't realize it b/c I see it every day.

Additional padding was added to the brace and we go back again in just less than two weeks to see how things are progressing. My mom also asked if the omphalocele was all that common. I think my mom was asking about the occurrence of the abdominal wall defect. The tech took it as her inquiring about the steps being taken to correct the defect. He told us  the use of a prosthetic device is very rare and there is only one published study.  The tech, like most doctors in all the different areas of medicine, seem to be appreciative of the chance to work with an omphalocele baby. Most say they have not seen one since residency.

*I'm going to add a picture of Willa's feet. I just don't think trying to take a picture right now will be conducive to trying to get her to sleep.

Grandma's First Day

My mom arrived safe and sound on Friday evening. Willa and I were not able to be a part of the chauffeur group. Willa was having a fussy night. I was still trying to feed/soothe/get her to sleep at 1030pm when mom called that her plane had landed.

Friday was a bit of a late night for everyone.  My UNC M Soccer team played a home NCAA quarterfinal match at 6pm. Sadly, they lost but the team had a great season and exceeded expectations after the 2011 national championship. My UNC W Soccer team was playing in the NCAA seminfinal match at 11pm and the game was being televised on ESPNU. In a perfect world, I would have caught a nap between the two games and have been able to stay up. Well, we all made it to halftime before crashing. We taped the game to watch the final in the morning. Of course, I cheated and checked the computer since I'm up every three hours to feed and pump. Very excited to say my ladies won!!!

Okay, back to my mom. Saturday started off with Willa waking up my mom with her cries during the diaper change. I don't think my mom minded. Daren and I changed the dressing on the omphalocele. Mom commented on how much smaller the om is in person than in pictures. We all sat around drinking coffee and having a gourmet breakfast of cereal. I don't think anyone took a shower until closer to 10am. After a quick lunch we started hauling all the Christmas decorations from the basement.

At 2pm Daren headed to Carborro to get a massage I had set up for him. My mom was convinced Willa needed a nap so they hunkered down on the couch. I'm not so sure Willa needed the nap as much as mom. I told mom to go nap in the guest room and I would handle baby duty. Willa and I headed outside for some Vitamin D and quality time with the neighbors.

Saturday evening Mom and I headed to Chapel Hill for the UNC M Basketball game versus UAB.  We had the use of one of my head coach's lower level tickets. My seats are up in the rafters. It was a sloppy game and we both were yawning. We were bad fans and left with three minutes to go.

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.