Christmas Travels

I had intentions of blogging while in Iowa visiting family but that didn't go as planned. We had a great trip and are home safe and sound. I'll just try and hit the highlights using mostly pictures.

- The outbound flight was easy. Willa was a bit sleepy in the airport waiting for our flight.

- Iowa is really cold and I didn't enjoy seeing temperatures in the negatives.

- We got to see most of the Keizer cousins for Christmas at the Rock Valley nursing home. We bring the celebration to the doorstep of Grandpa Keizer and Aunt Toots.  We gave Grandpa Keizer a calendar of all his 12 great grandchildren because that is a lot of names to remember.

- Opening presents was chaotic!Willa had no interest in her actual gifts because she was too busy flitting around the floor chasing the tissue paper.

- No pictures of my domination in hearts or any other card games so you will just have to take my word for it. The boys don't stand a chance against my skills.

- Briefly went outside when the heat wave of 30 degrees came through on Wednesday. I think Willa enjoyed the snow for as much as she could move.

- The return flight was also a breeze. Opening and closing the window was the fun game for the flight from Atlanta to RDU.

O Angel in Heaven

Last night while visiting with friends I received a text message from Baby Grant's mother that he passed away.  This message was posted by Grant's father on the Omphalocele Facebook page.

It is with a very heavy heart that Sabrina and I have to announce the death of our son Grant. He passed away last night in our arms surrounded by love. He put up and amazing fight for 115 days, his lungs were not able to support him any longer and he took his last breath as Sabrina and I held him.

Grant was only here for a short time but he changed not only our lives but all of those that were able to meet him or hear his story. Grant was always surrounded by love from Sabrina and I, family members, and the nurses/nurse practitioners/doctors of the NICU staff at UNC Hospitals.

We are asking for everyone to remember him by lighting a candle at 8:15PM tonight in his memory, and for as many nights as you would like. 

Grant is now flying with all the other Omphalocele Angels that were taken too early. He is also in the arms of Grandpa Pat and I’m sure both of them are watching over us during this time. Grant will be our guardian angel who will never be forgotten.

Merry Christmas Grant. I hope you enjoy the celebration in heaven.

Asking for Prayers

I'm not really sure who or how many people read this blog but people I care about are hurting and I'm hoping you can spare a moment during this busy holiday season to lift up a few words to the big man upstairs.

Baby Grant has been in the UNC NICU for 112 days due to his omphalocele and hypoplasic lungs. We have befriended Grant's parents and share their moments of celebration and sorrow. The doctors have not painted a pretty picture for Grant and he has a tough road ahead of him. Tomorrow Grant has surgery for the placement of a trach to assist with his breathing. Following the surgery, Grant will be under paralytic drugs for a week. I can't imagine... This Christmas will be spent watching their son... I'm not even sure how to end this one but please think of this family.

Edit only 10 minutes after posting. Just saw this on Facebook - Please pray for Grant. His condition is worsening and he is going for surgery today to get a trach put in. Please pray and send the most positive thoughts and energies for our amazing son that he gets better.

Last night I received an absolute shocker of a text message. My friend's father unexpectedly passed away. The back story on this one is just heartbreaking and I'm not sure it is my place to share the details. The long and short - My friend is on bed rest for the next five weeks after a tough time last week attempting to stop an active labor at 26 weeks 4 days. The doctors managed to stop the labor, sent my friend home on Saturday but was put on bed rest. Yesterday my friend's father had a follow up surgery at Duke due to the discovery of additional cancer cells. Last night I got the message that her father passed away during the surgery. 

I am a follower of Jesus Christ and believe in the good but this all just sucks. I know that I'm just a peon and don't understand the bigger picture of things but good people are being used as a punching bag. I'm incredibly excited to head home to see family and friends but my heart aches for friends here that I can't comfort while I'm away.

Four More Sleeps

Grandma Green better get the house ready for Willa!

Don't Get Comfortable

Willa had an appointment with the GI specialist on Wednesday. I didn't expect to learn anything new because it seemed like we are just chugging along. I was most excited to get an official height and weight for Willa. I thought the numbers were great. All I care about is seeing the numbers go up and they did! Willa is 29 inches long (daddy better hurry up and change out the car seat in his truck) and 16.5 pounds. Wahoo that is almost a pound gained in a month!! Apparently, I'm the only one celebrating.

GI wants to see a faster weight gain to support her length. Willa's BMI number is current the focus. Also, Willa has a bit of eczema on her face and the back of one knee. I thought it was due to the "cold" weather in North Carolina, but the GI thinks that the eczema is Willa's body reacting to the formula. There is the potential of trying to switch Willa's current formula to something that is even more broken down and easier to digest. GI also is still trying to find the magic formula that will suddenly increase Willa's liquid intake. I think they are searching for a unicorn because it ain't gonna happen!

It is so hard to tell if Willa's current medications are working or if they are even necessary. We are stopping the appetite stimulant medication on the weekends to try and "jump start" the effect. We don't think Willa is still refluxing but the nexium will continue. Finally, GI wants to add an additional medicine. The goal of the new medicine is to empty Willa's stomach faster to make her think that she is hungry. This one makes me shake my head because Willa poops 3-4 times a day!!! I think stuff is moving right along. Oh, and Daren was super enthused b/c he hates is very pro-medicine.

I talk about the MOO's Facebook page a good bit...but it really is an amazing group of people. Such a fabulous support to new moms, families, and omphalocele survivors. Just last night one of the moms posted about how we need to have a growth chart for omphalocele babies. I TOTALLY AGREE!!!!! O babies don't gain weight like non-o babies. They just don't! I think a new growth chart would help ease the stress for so many families. As a group we are working to increase omphalocele awareness any and every way we can.

Turkey Tryptophan

Thanksgiving has come and gone at the Streett house. We had a great visit with the Daren's family from Pennsylvania. I certainly know Willa enjoyed all of the attention from her cousins! I'm also glad that Daren's sister had her camera out 99% of the time because I kept forgetting to take pictures.

Willa found the bag of snacks brought by our traveling guests. Do you think she was trying to tell us that she was hungry?

Wednesday evening and Thursday morning was spent prepping for the Thanksgiving feast. Even Callie got involved by helping read the recipe for the cranberry sauce. The turkey with the dry brine was pretty darn tasty! I should have made a bigger bird because we only had a small amount for leftovers. Next year I'm going to estimate 1.5 pounds of meat per person. Willa helped me polish off my mashed potatoes. I had to go back twice for more gravy!

Friday was spent decorating the house for Christmas. A big thanks to AJ for helping his Uncle Daren hang the outdoor lights. Christmas just isn't complete without the Christmas palm tree proudly displayed on our porch. A lot of my indoor decorations are still packed away in the basement because they weren't made to withstand the abuse of a 13 month old. Also, the ornaments on the Christmas tree are lacking from the bottom part of the tree due to inquisitive fingers. However, the first ornament broken was not by Willa...but by her father. The green ball was the casualty of attempting to place a star on top of the tree.

We celebrated Christmas with Daren's family before they returned home. I think Willa made out the best! So many presents were placed in front of her that she didn't which one to open first.

Prepping for Thanksgiving

Pennsylvania family arrives in about a day and a half so that means that there is lots to do. Thanksgiving is quickly approaching! Both fridges are full of food to be cooked. We have four beds all set to go and plenty of clean towels. I think we hit all of the basics. This is the first full blown Thanksgiving meal cooked in the Streett household. I'm fairly confident I can pull this off…but if not we have pizzas in the freezer all set to go.

Thanksgiving 2012 seems like a lifetime away. Willa was just shy of a month old and had been discharged from the hospital two weeks prior. Neighbor Jayne provided all the sides (must have been 8+) and we just had to cook a turkey. It was a very calm weekend and I have a feeling that Thanksgiving 2013 is going to be the exact opposite. The dining room table will be set for 10. We have new friends and old friends joining us. I don't think Willa is going to have a quiet moment to herself.

My baby girl is such a big helper! Look how she even got thrown into the cleaning mix. Willa had to find all of her toys from under the couch. Mission accomplished.

Some of Willa's Favorites

Lots of pictures and few words. Just wanted to show the things that are keeping Willa busy. Also, unintentionally showing of some of Willa's pajamas. 

 Her new wooden train set and throwing out a super cute "so big".

 Our new friend Randy. He better stick around these parts so Willa can get a real motorcycle ride.

 Playing in the kitchen cupboard with the tupperware and baby dishes.

 Crawling around with objects in her mouth. Maybe this somehow got some extra calories into her system because she is 16 pounds!

 Playing under the dining room table and shoving the chairs around.

Cruising along the couch while stalking dad's computer.

In for the kill.

Therapy Sessions

Willa is continuing to have physical therapy sessions for her torticollis. All other milestones have been met. Even the torticollis seems to come and go. For a week at a time Willa holds her head perfectly straight and then we notice it is cocked to the side. Our physical therapist is checking on getting a neck collar.

Last week our Early Intervention coordinator did a site visit to observe one of Willa's PT sessions. This is the email our coordinator sent and we agree with everything she wrote...

OMG!! You should be SO grateful for your childcare provider and her family. They are awesome!!

W. is making such good progress (although I know she has regressed some with the torticollis). I’m looking forward to feeding therapy starting on Monday.

I was so impressed with W.’s language skills (expressive/receptive)..and her ability to label a few body parts. She is SO sweet! 

Today is the second feeding therapy session. Last week Willa was a perfect angel. No gagging, no refusing of the food, and not showing any of the things that make feeding frustrating. Daycare Sharon and I were in total disbelief. Daren and I did have a long conference call on Friday evening with the therapist. We talked over our concerns and the concerns of the doctors at UNC. The feeding therapist wants to take it slow with the introduction of new textures and foods. Currently, Willa is still eating three meals of baby cereal and purees. The only "real" food she is eating is bits of muffin. Willa is so close to being 16 pounds and hopefully this new assistance can help to start pack on the pounds.

Halloween in the 'Hood

Halloween is always a fun affair in our neighborhood. Our little section of Cary has grown from only a few houses to over 60. This was our first year taking part in the Halloween parade. Willa loved being in her spider costume. I was pretty worried that she would hate the head piece, but she never fussed. Also, Halloween was the first time Willa rode in her wagon. As you can tell she was pretty comfortable lounging while being pulled from  house to house. We didn't take any candy but two of the houses were ready for us. We got toddler biscuits from one house and a baby food pouch from the other. YUM!

I'm sure next year will be more exciting when Willa is walking from  house to house. Also, I'm gonna buy crap candy if we leave our candy bowl unattended. Those little rugrats cleaned us out of the Sour 

Patch Kids, Swedish Fish and Babyruth. Not cool.

Twelve Month Pictures

The last set of monthly pictures...ahh. I'm kinda glad if only from a safety factor. Willa is all about launching off the chair. Sitting still is not one of her strong suits.

Willa is finally bigger than her elephant. Slowly but surely we are getting the weight to stick. She hit 15 pounds just before her birthday. Willa continues to be behind 1-2 months in clothing sizes. She is just starting to wear 9m pants due to the 6m pants being a bit short. The 6m waist still fits her fine.

Willa got her first pair of walking shoes curtsey of Grandma Green. Her foot measured a 3.5 so we got her a size 4 "cruising" shoe. Too early to tell if Willa is going to wear size 12's like her momma.

Willa still shows no fear of strangers and shares her smiles and tricks quite freely. The bigger and more elaborate the necklace than the more likely Willa is to launch into your arms.

Daren and I have been parents for 12 months and counting. It has been a roller coaster ride but I definitely think there have been many more ups than downs. I wouldn't change a thing.

The Eleventh Month

Not to many exciting developments happened during the eleventh month. Grandma Green did make some great progress with Willa for pointing out various body parts (video to be posted soon). Willa has accomplished all of the should be able to and will probably be able to for the eleventh month. Cruising along the couch might be the most exciting change. Still working on the "extra credit" items that are listed below.

...may possibly be able to:

• stand alone  momentarily Maybe for 1/8th of a second
• say one word other than "mama" or "dada" We think we hear things like up or bye...but it is few and far between

...may even be able to:

• "play ball" (roll ball back to you) Daren said not on purpose
• drink from a cup independently She knows the process behind a sippy cup but doesn't completely tip it back enough to drink the water. Giving her a regular cup would be a mess. 

Willa's Birthday Party

Willa has amazing timing. The week of her birthday she got a cold. Willa lovingly passed along her cold to her father, Grandma Green and myself by the day of her birthday. We were still able to have her party but it was minus a few guests with little ones. Thankfully, I have yet to hear of anyone who attended the party who got sick.


We did attempt to give Willa a cupcake but she wasn't impressed. The only thing she was interested in was her birthday hat. Grandma Green stuck Willa's fingers in frosting but it didn't work. Only dramatics and gagging happened. I'm sure dad was happy b/c he doesn't like a mess. Next year...

Many months ago I was looking at another omphalocele blog and saw where the blogger asked guests to bring gifts for the Ronald McDonald house in lieu of items for the birthday boy. I loved that idea and wanted to do the same thing for the NICU at UNC Hospital. Willa spent two weeks in the NICU and our friend's the Miles are currently on week 10 of their son being at UNC. This next part is kinda hard to put into words - The nurses genuinely care and fight for these babies. One of those struggles is to clothe the babies in appropriate sized clothing as well as gender appropriate. That may seem silly to some of you...but as a parent it really brightened my day to walk into the NICU the first thing in the morning and see Willa in a different onsie than the day before. That little bit of fabric managed to soften the glare of all the wires and patches connecting my baby girl to the various machines and monitors. So thank you friends for being so generous.

Not to worry about Willa. She got some birthday gifts. Here she is sitting so proud in the new chair from mom and dad while playing with some animals. My happy little one year old girl.

Birthday Tailgate and Football Game

Ugh! I hate blogging on things a week late and this is the first of many posts that are long overdue. We had pre-party festivities for Willa's first birthday. The pre-party was a tailgate before the UNC v. Boston College football game. Thank you to the TV execs for making game time 3:30pm because I think a 12:30pm game makes it really tough to tailgate.

The weather for the tailgate was amazing. The sunshine felt great. The actual game got a bit chilly. My mom mentioned that she wished she had her long underwear. I'm happy to report that UNC crushed BC even though we left during the third quarter.

Willa only attended the tailgate but I still think she can add a UNC football game to the sport events she has attended. Thanks to my coaches for letting us use their tickets and parking pass.