Omphalocele Awareness

Tomorrow is Omphalocele Awareness Day. I've been posting something each day this week on my Facebook account about the diagnosis and care of omphaloceles along with some or our personal experiences. This was the first time that I've publicly posted about Willa's medical history on Facebook. I have 576 friends on Facebook and while I hope everyone has a "perfect" pregnancy and baby...we all know that things can happen. If my words can be support to a friend or a friend of a friend than I feel like I did some good.

North Carolina Weather

How do we go from 65 degrees on Monday to snowpocalypse on Tuesday? Yesterday we spent a good 40 minutes outside with the neighborhood kids playing with all the doggies. Today we could get up to three inches of snow! Such crazy weather.

This morning Daren is bringing Willa to the pediatrician for her 15 month checkup. I'm eagerly waiting to hear the details of her weight. Fingers crossed for a big gain!

Opposite Direction

Willa hasn't been eating well since Saturday. There has also been random occurrences of throwing up. It has been baffling. She isn't teething from what we can tell. Willa doesn't have a fever. She is still sleeping great…and then Tuesday night during the dream feed I could tell she was starting to get congested. Wednesday we used a good number of boogie wipes and had to try and appease a very clingy baby and it all ramped up on Thursday so off we went to the pediatrician's office.

Willa has an ear infection and respiratory infection. Also, Willa is looking smaller because she has dropped a significant amount of weight. Willa weighed 17lb 2 oz on January 9th for her SICU appointment. This afternoon Willa only weighed 16lb 9oz.

Hopefully we can kick this infection quickly and start to rebound.

Doctor's Visit or Play Date?

Last week Thursday was Willa's second appointment with the Special Infant Care Unit at UNC. A select number of previous NICU babies are followed by the SICU team due to the risk of the infants having developmental delays. This visit was a breeze as Willa made fast friends with everyone who examined her. Plus, as alluded to by the blog title...I think some of the specialists hung around our room a bit longer than necessary to play with Willa.

First up was physical therapy. She did notice a slight bit of head tilt but only because she knew to look for it. Also said that Willa is very flexible and asked if Willa sits in a "W". Apparently "W" sitting is bad for the joints and we need to try and correct her to sit cross legged instead. Willa's core is still weak and we were given some "baby sit up" exercises to give Willa some rocking abs. A stronger core will also help her ability in walking and standing.

Next came the nutritionist and the speech therapist. Willa did have a slight gain with her weight now at 17lb 2oz but she is not getting the ideal amount of calories per day. We are hoping drinking Pediasure Peptide will give Willa that needed boost she needs and so far it seems to be working. Speech wanted to go over Willa's language skills, imaginary play, and listening comprehension. Willa passed with flying colors. We were asked if Willa was saying "ga ga ga" and both Daren and I didn't think we had heard those syllables. Willa proved us wrong and promptly repeated "ga ga ga" back to the therapist. We have a genius child.

Here is a video that shows some of the appropriate language skills and imaginary play that is appropriate for a 14 month old. You will also see her sitting incorrectly and us neglecting to correct the behavior.
- uh oh
- hi
- woof woof
- talking on the phone
- taking commands (give the phone to Daddy)

Concussion and Allergy Testing

I know that is an odd title. Half of it refers to myself and the other half refers to Willa. Monday was a super fun day.

Please note that before I start talking about myself that it is absolutely acceptable to laugh at my expense. Everyone who has heard my story showed a mixture of emotions - sympathy, disbelief and amusement. It was very windy and raining when I arrived at my work parking lot on Monday morning.    I put on my hood and popped my back door to get my umbrella from the back of my SUV. You can imagine, I'm walking with my head down trying to save my beautifully straightened hair and BAM! I run smack into the raised rear door of my vehicle. The concussion is an actual diagnosis as I work less than 100 yards from the UNC athletic training room (great job perk). I will run a very wide clearance of the rear car door in the future. Lesson learned.

The second half of this post is about Willa's allergy testing. Thankfully, my neighbor Larry was willing to assist me with transportation since a person should not drive post concussion. HUGE thanks is due.  The doctors tested Willa for an egg and milk allergy after hearing the multiple occurrences of a rash after consuming eggs. The testing was done via skin pricks and both came back seemingly okay. Well, because of Willa's medical history, one test is never enough. The doctors also wanted to get blood work taken. We will get those results back in the next day or so but it looks like Willa is fine. I'm fairly certain I was told we can continue to give Willa items with baked eggs but I don't have a recollection of what they said about low heat eggs. I blame my concussion for lack of focus and memory.

Thursday is Willa's second NICU follow-up visit. I'm expecting to see 6-8 different specialists with everyone asking the same questions while testing Willa's milestones.

I just have to throw in a picture to add some cuteness to this wall of text. Willa is constantly getting in and out of her chair. Also, I think this hooded outfit makes her look like the boy from the book Where the Wild Things Are.

Feeding Fun

Feedings continue to be trial and error with Willa. We are slowly adding items to the list of foods that she will eat. The gagging and throwing up seems to have stopped (knock on wood). I've heard through the grapevine that people have an "Ack! Feed that child" response when they see pictures of Willa.  If only they knew how hard we are trying.

We did have a setback while in Iowa. On Saturday morning I got Willa to eat scrambled eggs. We had tried them at home before and she only took about 2-3 bites but on this morning I got her to eat 14 bites of egg. That is HUGE! I then turned the feeding job over to my niece Avery so I could go accomplish something. Fast forward to after Willa's morning nap and we had a child with a red and rashy face. Willa is allergic to eggs. She had the same reaction after eating the eggs at home but that was right when she started to have eczema so I didn't even think of linking the redness to the eggs. We are going to see an allergist on Monday. I don't know a lot about allergies but Willa seems to be fine after eating things like muffins and pancakes which both contain eggs. Is that a good sign that she could outgrow the egg sensitivity?

Here is what Willa will eat and you will notice they are things of similar texture -

Hummus
Chip Dip (tried once in Iowa as documented by the picture)
Macaroni & Cheese  - I think her record is 10 noodles
Cheese - We always offer this after she is done eating. She loves the stuff
Pancakes - Will only eat a teeny tiny bit but I'm going to keep trying
Mashed Potatoes & Gravy - This is becoming a staple of her diet. I even froze 10 small containers of gravy so I always have it on hand.
Muffins