Claire Marie’s Journey - Lets ditch this NG tube!

Hi everyone!

My name is Alyssa and I am making this on behalf of my Friends, Angie and Nick, and their beautiful family. They are the last people in the world to ask for help but right now they are facing so many challenges with very little answers to even start finding a routine with a new normal. I will post updates as much as possible and below is the first post Nick made on 2/8/24. I will post an update from today (2/11/24) following this one. Thank you all for your thoughts, messages, prayers and kindness. I know it means the world to them. Updates can also be found on Caring Bridge.org.

Claire was born 11-21-2023 at healthy numbers and had been hitting all of her milestones until about the second week of January 2024. She slowly began taking less and less of her bottles until a point where she refused all together. After serious concern over dehydration, Claire was admitted to Blank Children's Hospital in Des Moines on 2-4-24 for Failure to Thrive (FTT). After hours of testing and observation it became clear that Claire had GERD, or a very serious case of reflux. Unfortunately, because of this, she also developed a feeding aversion because eating was making her feel so yucky and a feeding tube had to be placed in order to get her nutrition. After 10 days at Blank the Patrick's were able to return home with Claire and work on things in a more comfortable environment. After consultation with folks who had experience with this type of condition they were referred to Growing Independent Eaters (GIE) which strictly focuses on weaning children from feeding tubes with amazing success. Unfortunately, this program comes with a high cost and is not covered by insurance. Angie is also taking more time from work necessary to stay home and work with Claire leaving them with a 1 household income. Lets help Claire overcome this aversion obstacle and get this tube out asap!!

Info about GIE can be found at gieaters.com

If you are more comfortable donating directly to Nick and Angie or myself I will post Venmos below. If youre not able to donate, please keep the Patricks in your thoughts and prayers.

Again, thank you all so much. In times like these we truly get to see how wonderful community, family and friends are and how much good there is in the world!

Nick’s: @Nicholas-Patrick-11

Alyssa’s: @agalema

From Nick 2/8/24:

Hello all! We wanted to make it more streamlined to provide updates for our sweet Clare and felt this was the easiest way to do it for those interested. 

Over the course of a few weeks Claire had slowly but consistently started refusing bottles at her normal feed times. It was puzzling to us but we still committed to our regular schedules with her. Even more puzzling was she never once showed any signs of hunger or fussiness other than being woken up (she hates to be woken up) Last Thursday we made a special appointment with her Ped to try to get a handle on what is going on. In 1 month, Claire had dropped from the 35th percentile in weight to the 25th. In 6 days from the 25th to the 21st. Clearly something was wrong. She prescribed meds for reflux and sent us home to monitor progress.

Those events came to a head last Sunday when Claire completely refused all bottles during the night feeds as well as the morning. We drove to Mary Greeley hospital in Ames where blood testing was done. After results came back Claire was severely dehydrated and her O2 levels were in the tank. The decision was immediately made to start an IV (3 blown attempts) and transfer her to Blank Children's hospital in Des Moines where feeding tube was placed and we have remained since.

Upper GI imaging and testing was done to try to identify any possible issues with her anatomy or otherwise and results say no issues. The best guess at this point is due to reflux but there are a lot of variables with her equation that don’t necessarily add up with that answer.

Since being here- her color and demeanor has dramatically changed for the better however. Hydration has returned and she is getting food in her tummy. Yesterday (7th) Claire had an amazing day and took nearly EVERY bottle without any issues. However, today Claire took a few steps back and refused her morning bottle and had to be fed via the NG. Her bottles since have been a struggle with some success and sone not so much.

At this point it is a trial and error game to try and nail down whatever is going on. Her Drs would like to see 36 hours of trouble free feedings before we talk about discharge. Basically at this point we have no idea when Claire will be out of the woods but we will do whatever necessary to make sure she comes out of this and back to our happy healthy and thriving baby girl. She has a great team and we are optimistic about her outcome. To help us remain positive- Claire has (from the very first day) Smiled, cooed and assured us God will provide answers and reassurance! On a personal level I want to thank each and every person who has reached out to Angie and I with love, compassion, donations etc. You have all been incredible and we cant thank you enough for help through this time.