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.